Ohio, Pennsylvania offer health services following train derailment, but some residents feel skeptical | CNN


Darlington Township, Pennsylvania
CNN
 — 

The municipal building in tiny Darlington Township, Pennsylvania, was buzzing with activity on Wednesday afternoon as a stream of locals arrived seeking information on health screenings, chemical exposures and well testing.

Darlington, home to about 1,800 people, sits just over the border from East Palestine, Ohio, the site of a catastrophic train derailment and controlled burn of toxic chemicals that sent black smoke billowing over the area for days in early February. Residents here say the wind blew acrid smoke into their homes and coated their cars with a fine ash. State and federal officials gave East Palestine residents the all-clear to return to their homes days later.

But residents in both places are now wondering whether their water is safe to drink and their air safe to breathe. The characteristic floral, fruity odor of butyl acrylate still permeates some homes and wafts up from some of the impacted streams that run through the town. Some say they’re experiencing symptoms – cough, headaches, rashes, watering eyes and dripping noses – that might be related to a chemical exposure.

Government-run community resource centers and health clinics have opened in East Palestine and Darlington to answer residents’ questions and connect them to any care they might need. More than 140 people have come to the clinic in East Palestine since it first opened on February 21, according to the Ohio Department of Health. The Darlington center opened February 28, and more than 200 people visited in its first two days, according to the Pennsylvania Department of Health.

Still, some residents are skeptical of the clinics, and the response overall. While many residents who live near the derailment site are following the testing for chemicals in the air and water, what they really want to know is whether they’ve had chemicals from the accident in their bodies, and whether those chemicals have impacted their health.

They’re swapping information online, and seeking out blood tests they hope will identify potential problems. Some are seeking out medical care so there’s a record of their symptoms.

On the advice of a lawyer, Ron Book and his wife came to the East Palestine Health Assessment Clinic on Wednesday afternoon to have their illnesses documented. Book says since the derailment, his nose has been running constantly. He has a sore throat, and he feels stuffy.

“It’s like I have a cold, but I don’t have a cold,” he said.

Book said he saw a doctor who took his vitals and advised him to keep up with the regular blood work that he needs for his ongoing treatment for prostate cancer. He was inside for about 45 minutes, and said the experience was helpful, and about what he expected.

“They can’t heal you,” Book says, “because nobody knows about this chemical.”

At the Darlington center, tables were staffed with experts to answer questions about the chemicals involved in the train derailment, free well and air testing for residents, and potential impacts to area farms.

There were pamphlets on how to manage stress following a disaster and mental health counselors, as well as Zuko, a 3-year-old Great Dane therapy dog.

Residents are also invited to take a nine-page questionnaire to contribute data to a newly launched Assessment of Chemical Exposure, or ACE, study, which is being conducted by the federal Agency for Toxic Substances and Disease Registry. Health investigators can use their data to inform a study into the health effects associated with the chemical exposures after the derailment.

People could see a doctor, or get referrals for a primary care physician.

“I think approximately 40% of people sought some sort of clinical evaluation,” said Nate Wardle, who is the special response project manager for the Pennsylvania Department of Health.

Wardle said when they opened the clinic, they weren’t sure what to expect – whether residents would be angry that it took more than three weeks to get them these services. So far, he said, people have been grateful and eager to get the help.

Jim Denes, who is 71, came to the health clinic in Darlington Township on Wednesday. He said he lives less than 2 miles from the accident site. On Friday of last week, Denes said he felt awful.

“I was just miserable. I was trying to cough up stuff, I couldn’t,” Denes said. “My eyes were all runny and watery.”

He said he took a Covid-19 test, but it was negative.

Denes said he’s extremely tired and had to drag himself to the clinic, but he’s glad he did. The doctor he saw diagnosed him with bronchitis and prescribed an antibiotic. The clinic was a lot closer than his regular doctor in Ellwood City, and he was able to walk in and be seen without a wait.

Denes said the doctor told him he couldn’t say whether it was related to the chemicals that were spilled or not.

Some residents said they have no interest in going to government-run health clinics.

“I honestly, at this point, don’t know who’s working with who and I really just don’t trust anything that has to do with the government right now,” said Giovanni Irizarry, whose family lives within a mile of the train derailment site.

In the evening hours of February 3, his wife Ashley Irizarry was driving to work when she noticed she could see thick black smoke hanging in the air, even though it was dark. Eventually, she saw the raging fire along the railroad tracks.

That night, Ashley had a red rash on her cheeks, her eyes were burning and red and a metallic chemical smell had burned her nose and throat. On Saturday, Giovanni said, his lips burned like he’d had scalding hot soup. Giovanni’s mother, who was living with them, developed a cough so severe she couldn’t catch her breath. The Irizarrys evacuated on Sunday to Boardman, Ohio, about 15 miles away.

They returned home on Saturday, February 11, in anticipation of school restarting on Monday.

As soon as they got close to town, Giovanni said, “I immediately felt my lips like start that burning sensation.”

He and his mom started coughing. His wife and kids developed debilitating and unrelenting headaches. After the kids came home from school on Monday, both started vomiting.

Ashley says she has taken the family to their primary care doctor, an urgent care and the hospital.

“It was not getting better,” she said.

Medical records reviewed by CNN show Ashley was prescribed a steroid and given a chest X-ray due to “toxic effects of gas exposure.” Her son was also diagnosed with chemical exposure.

When the doctors looked into her nose and throat they told her ” ‘Your mucous membranes are all pale. Like they were burned,’ but they didn’t know what to do at this time,” Ashley said in an interview with CNN on Wednesday.

On public Facebook groups, residents are sharing names of providers who will order blood testing for chemical exposures, which isn’t something either of the government-run clinics is doing currently. Some have even tried to do their own research to try to identify the medical codes needed to order tests for specific chemicals in the blood from large labs.

Instead of going to the government health clinic, on Wednesday, Ashley went to see their chiropractor, Richard Tsai, who has been ordering certain blood tests for existing patients who think they have having health problems connected to chemical exposures from the derailment.

Tsai’s practice, Blackhawk Chiropractic, is right next door to the Darlington Township community resource center and clinic that was opened by the Pennsylvania Department of Health and other state agencies this week.

The tests Tsai orders are general and standard in medical care – a test called a complete blood count, which measures levels of red cells, white cells, and clotting factors in the blood; and a test called a basic metabolic panel, which measures blood sugar, electrolytes, and kidney function. If his patients ask for it, he also orders a more specialized test that measure exposure to the chemical benzene. In the past two days, he estimates about 15 patients have asked him for blood testing.

Tsai, who lives in East Palestine, says he’s been frustrated by the government’s response.

“We shouldn’t be having to do this,” Tsai said, in an interview with CNN on Wednesday.

“Why are people having to figure this out on Facebook? These people need to know where to go and what’s available.”

Dr. Bruce Vanderhoff, director of the Ohio Department of Health, pushed back against the idea that the government wasn’t giving people enough information. He said that during the course of the medical assessment at the health clinic, the clinic physician might make recommendations for further testing, but that would be done by the person’s regular doctor.

If people don’t have a doctor that they see regularly, Vanderhoff said they are trying to help residents find one.

Vanderhoff said it would be important for the primary care providers to continue to monitor changes in a patient’s overall health.

“Because when we look at the chemicals involved, especially the primary chemical vinyl chloride, there is simply not a blood test that we can do or a urine test that we can do that would say ‘Aha! You had an exposure,’ ” Vanderhoff said. “That would be great, but that’s just not the case.”

Tsai, who lives in East Palestine, said that he’s legally able to order medical tests, so he does, within limits. “Why wouldn’t you do that?” he said.

Dr. Erin Haynes, the chairperson of the department of epidemiology and environmental health at the University of Kentucky, says she thinks it’s sound for residents to seek out common blood tests.

In an email to CNN, Haynes said in addition to a complete blood count and basic metabolic panel she would add a liver function test, since vinyl chloride, one chemical that was on the train, can damage the liver.

But Haynes says trying to test for specific chemicals may be a step too far.

“Testing for chemical exposure at this point is a difficult,” says Haynes, who has helped impacted communities investigate environmental exposures. “The high levels are now gone, and we aren’t exactly sure what to measure in blood or urine since we don’t know what chemicals formed during the fire. There are suspects, but not clear answers yet.”

Haynes said it would be ideal to collect blood and urine samples now, but store them for later testing, but this would be difficult for a local clinic to do.

Overall, Haynes says the government’s response to chemical spills like this one leaves something to be desired.

“The community is in dire need of an organized and coordinated health monitoring study that includes exposure assessment,” said Haynes, who hopes to bring such a study to the area soon.

Down the road, she says, there’s still a lot to learn about the health impacts of environmental exposures to toxins.

“We also need more research on what these chemicals do and methods for rapid testing,” Haynes said. “Communities with railroad must know what is moving through their community, when and how much. They also must receive training on how to safely respond when a disaster occurs.”

Source link

#Ohio #Pennsylvania #offer #health #services #train #derailment #residents #feel #skeptical #CNN

Stem cell therapy may reduce risk of heart attack and stroke in certain heart failure patients, study shows | CNN



CNN
 — 

Cell therapy, involving adult stem cells from bone marrow, has been shown to reduce the risk of heart attack and stroke in severe heart failure patients, according to a new study.

A single administration of adult stem cells directly into an inflamed heart, through a catheter, could result in a long-term 58% reduced risk of heart attack or stroke among heart failure patients with reduced ejection fraction, meaning they have a weakened heart muscle, suggests the study, published Monday in the Journal of the American College of Cardiology.

The study is being called the largest clinical trial of cell therapy to date in patients with heart failure, a serious condition that occurs when the heart can’t pump enough blood to meet the body’s needs.

“We followed these patients during several years – three years – and what we found was that their hearts got stronger. We found a very significant reduction in heart attack and stroke, especially in the patient that we measured in their blood that they had more inflammation going on,” said the study’s lead author Dr. Emerson Perin, a practicing cardiologist and medical director at The Texas Heart Institute in Houston.

“That effect, it was there across everyone, but for the patient that had inflammation, it was even more significant,” Perin said. “And there also is evidence that we had a reduction in cardiovascular deaths.”

The therapy involves injecting mesenchymal precursor cells into the heart. These particular stem cells have anti-inflammatory properties, which could improve outcomes in heart failure patients since elevated inflammation is a hallmark feature of chronic heart failure.

More than 6 million adults in the United States have chronic heart failure, and most are treated with drugs that address the symptoms of the condition. The patients included in the new study were all taking medications for heart failure, and the new research suggests that cell therapy can be beneficial when used in conjunction with heart failure drugs.

“You can imagine, we keep everybody going and doing better with the medicine. And now we have a treatment that actually addresses the cause and quiets everything down. So, this line of investigation really has a great future and I can see that, with a confirmatory trial, we can bring this kind of treatment into the mainstream,” Perin said.

“We can treat heart failure differently,” he said. “We have a new weapon against heart failure and this study really opens the door and leads the way for us to be able to get there.”

The new study – sponsored by Australian biotechnology company Mesoblast – included 565 heart failure patients with a weakened heart muscle, ages 18 to 80. The patients were screened between 2014 and 2019 and randomly assigned to either receive the cell therapy or a placebo procedure at 51 study sites across North America.

The patients who received the cell therapy were delivered about 150 million stem cells to the heart through a catheter. The cells came from the bone marrow of three healthy young adult donors.

The researchers, from The Texas Heart Institute and other various institutions in the United States, Canada and Australia, then monitored each patient for heart-related events or life-threatening arrhythmias.

Compared with the patients who received a sham procedure, those treated with the stem cell therapy showed a small but statistically significant strengthening of the muscle of the heart’s left pumping chamber within a year.

The researchers also found that the cell therapy decreased the risk of heart attack or stroke by 58% overall.

“This is a long-term effect, lasting an average of 30 months. So that’s why we’re so excited about it,” Perin said.

Among patients with high inflammation in their bodies, the combined reduced risk of heart attack or stroke was even greater, at 75%, the researchers found.

“These cells directly address inflammation,” Perin said.

“They have little receptors for these inflammatory substances – some of them are called interleukins, and there’s other kinds,” he said. “When you put them into an inflamed heart, it activates the cells and the cells go, ‘Wow, we need to respond. This house is on fire. We need to put out the fire.’ And so they then secrete various anti-inflammatories.”

The researchers wrote in their study that their findings should be considered as “hypothesis generating,” in that they show this cell therapy concept could work, but clinical trials would be needed to specifically confirm the effects of these stem cells on heart attack, stroke and other events. It is still unclear for how long the effects of the stem cell therapy last beyond 30 months and whether patients will need more stem cell injections in the future.

Overall, there were no major differences between the adverse events reported among the patients who received the cell therapy compared with those in the control group, and the researchers reported no major safety concerns.

“We’ve made an enormous step to be able to harness the real power of adult stem cells to treating the heart,” Perin said. “This trial really is a signal of a new era.”

For more than a decade, scientists have been studying potential stem cell therapies for heart failure patients – but more research is needed to determine whether this treatment approach could reduce the amount of hospitalizations, urgent care events or complications among patients with heart failure.

The new study didn’t find that, said cardiologist Dr. Nieca Goldberg, medical director of Atria New York City and clinical associate professor of medicine at NYU Grossman School of Medicine, who was not involved in the latest study.

What the new study did find is that “there may be a population of people that could benefit from the stem cell therapy, particularly people who have inflammation,” Goldberg said.

“It’s actually an interesting therapy, an interesting thing to consider, once more research substantiates its benefit. Because in heart failure, there’s multiple things going on and, particularly for the inflammatory component, this could be an interesting treatment,” she said. “It might have some role in heart failure patients with inflammation.”

The therapy’s effects on heart attack or stroke risks “were positive,” Dr. Brett Victor, a cardiologist at the Cardiology Consultants of Philadelphia, who was not involved in the study, said in an email.

“Specifically, patients who received the stem cell therapy were less likely to have a heart attack or stroke over the next 2.5 years, especially among those who were found to have a high degree of systemic inflammation as measured by a laboratory test,” Victor said in the email, adding that this represents how heart failure has a significant inflammatory component.

Those “positive signals” likely will be evaluated more in subsequent studies, Victor said.

“Current therapies for heart failure including lifestyle modifications, a growing list of excellent medications, and device therapies will continue to be the standard of care for treatment in the near-term,” he said. “I suspect that this trial will continue to move the field forward in studying cardiac cell therapy as we continue to look for ways to not just treat, but actually find a cure for this disease.”

Source link

#Stem #cell #therapy #reduce #risk #heart #attack #stroke #heart #failure #patients #study #shows #CNN

Beware the budget butt lift, regulators warn amid social media-inspired boom | CNN

In hindsight, Nikki Ruston said, she should have recognized the red flags.

The office in Miami where she scheduled what’s known as a Brazilian butt lift had closed and transferred her records to a different facility, she said. The price she was quoted – and paid upfront – increased the day of the procedure, and she said she did not meet her surgeon until she was about to be placed under general anesthesia.

“I was ready to walk out,” said Ruston, 44, of Lake Alfred in Central Florida. “But I had paid everything.”

A few days after the July procedure, Ruston was hospitalized due to infection, blood loss, and nausea, her medical records show.

“I went cheap. That’s what I did,” Ruston recalled recently. “I looked for the lowest price, and I found him on Instagram.”

People like Ruston are commonly lured to office-based surgery centers in South Florida through social media marketing that makes Brazilian butt lifts and other cosmetic surgery look deceptively painless, safe, and affordable, say researchers, patient advocates, and surgeon groups.

Unlike ambulatory surgery centers and hospitals, where a patient might stay overnight for observation after treatment, office-based surgery centers offer procedures that don’t typically require an inpatient stay and are regulated as an extension of a doctor’s private practice.

But such surgical offices are often owned by corporations that can offer discount prices by contracting with surgeons who are incentivized to work on as many patients per day as possible, in as little time as possible, according to state regulators and physicians critical of the facilities.

Ruston said she now lives with constant pain, but for other patients a Brazilian butt lift cost them their lives. After a rash of deaths, and in the absence of national standards, Florida regulators were the first in the nation to enact rules in 2019 meant to make the procedures safer. More than three years later, data shows deaths still occur.

Patient advocates and some surgeons – including those who perform the procedure themselves – anticipate the problem will only get worse. Emergency restrictions imposed by the state’s medical board in June expired in September, and the corporate business model popularized in Miami is spreading to other cities.

“We’re seeing entities that have a strong footprint in low-cost, high-volume cosmetic surgery, based in South Florida, manifesting in other parts of the country,” said Dr. Bob Basu, a vice president of the American Society of Plastic Surgeons and a practicing physician in Houston.

During a Brazilian butt lift, fat is taken via liposuction from other areas of the body – such as the torso, back, or thighs – and injected into the buttocks. More than 61,000 buttock augmentation procedures, both butt lifts and implants, were performed nationwide in 2021, a 37% increase from the previous year, according to data from the Aesthetic Society, a trade group of plastic surgeons.

As with all surgery, complications can occur. Miami-Dade County’s medical examiner has documented nearly three dozen cosmetic surgery patient deaths since 2009, of which 26 resulted from a Brazilian butt lift. In each case, the person died from a pulmonary fat embolism, when fat entered the bloodstream through veins in the gluteal muscles and stopped blood from flowing to the lungs.

No national reporting system nor insurance code tracks outcomes and patient demographics for a Brazilian butt lift. About 3% of surgeons worldwide had a patient die as a result of the procedure, according to a 2017 report from an Aesthetic Surgery Education and Research Foundation task force.

Medical experts said the problem is driven, in part, by having medical professionals like physician assistants and nurse practitioners perform key parts of the butt lift instead of doctors. It’s also driven by a business model that is motivated by profit, not safety, and incentivizes surgeons to exceed the number of surgeries outlined in their contracts.

In May, after a fifth patient in as many months died of complications in Miami-Dade County, Dr. Kevin Cairns proposed the state’s emergency rule to limit the number of butt lifts a surgeon could perform each day.

“I was getting sick of reading about women dying and seeing cases come before the board,” said Cairns, a physician and former member of the Florida Board of Medicine.

Some doctors performed as many as seven, according to disciplinary cases against surgeons prosecuted by the Florida Department of Health. The emergency rule limited them to no more than three, and required the use of an ultrasound to help surgeons lower the risk of a pulmonary fat clot.

But a group of physicians who perform Brazilian butt lifts in South Florida clapped back and formed Surgeons for Safety. They argued the new requirements would make the situation worse. Qualified doctors would have to do fewer procedures, they said, thus driving patients to dangerous medical professionals who don’t follow rules.

The group has since donated more than $350,000 to the state’s Republican Party, Republican candidates, and Republican political action committees, according to campaign contribution data from the Florida Department of State.

Surgeons for Safety declined KHN’s repeated interview requests. Although the group’s president, Dr. Constantino Mendieta, wrote in an August editorial that he agreed not all surgeons have followed the standard of care, he called the limits put on surgeons “arbitrary.” The rule sets “a historic precedent of controlling surgeons,” he said during a meeting with Florida’s medical board.

In January, Florida state Sen. Ileana Garcia, a Republican, filed a draft bill with the state legislature that proposes no limit on the number of Brazilian butt lifts a surgeon can perform in a day. Instead, it requires office surgery centers where the procedures are performed to staff one physician per patient and prohibits surgeons from working on more than one person at a time.

The bill would also allow surgeons to delegate some parts of the procedure to other clinicians under their direct supervision, and the surgeon must use an ultrasound.

Florida’s legislature convenes on March 7.

Consumers considering cosmetic procedures are urged to be cautious. Like Ruston, many people base their expectations on before-and-after photos and marketing videos posted on social media platforms such as Facebook, Snapchat, and Instagram.

“That’s very dangerous,” said Basu, of the American Society of Plastic Surgeons. “They’re excited about a low price and they forget about doing their homework,” he said.

The average price of a buttocks augmentation in 2021 was $4,000, according to data from the Aesthetic Society. But that’s only for the physician’s fee and does not cover anesthesia, operating room fees, prescriptions, or other expenses. A “safe” Brazilian butt lift, performed in an accredited facility and with proper aftercare, costs between $12,000 and $18,000, according to a recent article on the American Society of Plastic Surgeons’ website.

Although Florida requires a physician’s license to perform liposuction on patients who are under general anesthesia, it’s common in the medical field for midlevel medical practitioners, such as physician assistants and nurse practitioners, to do the procedure in office settings, according to Dr. Mark Mofid, who co-authored the 2017 Aesthetic Surgery Education and Research Foundation task force study.

By relying on staffers who don’t have the same specialty training and get paid less, office-based surgeons can complete more butt lifts per day and charge a lower price.

“They’re doing all of them simultaneously in three or four different rooms, and it’s being staffed by one surgeon,” said Mofid, a plastic surgeon in San Diego, who added that he does not perform more than one Brazilian butt lift in a day. “The surgeon isn’t doing the actual case. It’s assistants.”

Basu said patients should ask whether their doctor holds privileges to perform the same procedure at a hospital or ambulatory surgery center, which have stricter rules than office surgery centers in terms of who can perform butt lifts and how they should be done.

People in search of bargains are reminded that cosmetic surgery can have other serious risks beyond the deadly fat clots, such as infection and organ puncture, plus problems with the kidneys, heart, and lungs.

Ruston’s surgery was performed by a board-certified plastic surgeon she said she found on Instagram. She was originally quoted $4,995, which she said she paid in full before surgery. But when she arrived in Miami, she said, the clinic tacked on fees for liposuction and for post-surgical garments and devices.

“I ended up having to pay, like, $8,000,” Ruston said. A few days after Ruston returned home to Lake Alfred, she said, she started to feel dizzy and weak and called 911.

Paramedics took her to an emergency room, where doctors diagnosed her with anemia due to blood loss, and blood and abdominal infections, her medical records show.

“If I could go back in time,” she said, “I wouldn’t have had it done.”

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Source link

#Beware #budget #butt #lift #regulators #warn #social #mediainspired #boom #CNN

Most Americans are uncomfortable with artificial intelligence in health care, survey finds | CNN



CNN
 — 

Most Americans feel “significant discomfort” about the idea of their doctors using artificial intelligence to help manage their health, a new survey finds, but they generally acknowledge AI’s potential to reduce medical mistakes and to eliminate some of the problems doctors may have with racial bias.

Artificial intelligence is the theory and development of computer programs that can solve problems and perform tasks that typically would require human intelligence – machines that can essentially learn like humans can, based on the input they have been given.

You probably already use technology that relies on artificial intelligence every day without even thinking about it.

When you shop on Amazon, for example, it’s artificial intelligence that guides the site to recommend cat toys if you’ve previously shopped for cat food. AI can also help unlock your iPhone, drive your Tesla, answer customer service questions at your bank and recommend the next show to binge on Netflix.

Americans may like these individualized services, but when it comes to AI and their health care, it may be a digital step too far for many.

Sixty percent of Americans who took part in a new survey by the Pew Research Center said that they would be uncomfortable with a health care provider who relied on artificial intelligence to do something like diagnose their disease or recommend a treatment. About 57% said that the use of artificial intelligence would make their relationship with their provider worse.

Only 38% felt that using AI to diagnose disease or recommend treatment would lead to better health outcomes; 33% said it would lead to worse outcomes; and 27% said it wouldn’t make much of a difference.

About 6 in 10 Americans said they would not want AI-driven robots to perform parts of their surgery. Nor do they like the idea of a chatbot working with them on their mental health; 79% said they wouldn’t want AI involved in their mental health care. There’s also concern about security when it comes to AI and health care records.

“Awareness of AI is still developing. So one dynamic here is, the public isn’t deeply familiar with all of these technologies. And so when you consider their use in a context that’s very personal, something that’s kind of high-stakes as your own health, I think that the notion that folks are still getting to know this technology is certainly one dynamic at play,” said Alec Tyson, Pew’s associate director of research.

The findings, released Wednesday, are based on a survey of 11,004 US adults conducted from December 12-18 using the center’s American Trends Panel, an online survey group recruited through random sampling of residential addresses across the country. Pew weights the survey to reflect US demographics including race, gender, ethnicity, education and political party affiliation.

The respondents expressed concern over the speed of the adoption of AI in health and medicine. Americans generally would prefer that health care providers move with caution and carefully consider the consequences of AI adoption, Tyson said.

But they’re not totally anti-AI when it comes to health care. They’re comfortable with using it to detect skin cancer, for instance; 65% thought it could improve the accuracy of a diagnosis. Some dermatologists are already exploring the use of AI technology in skin cancer diagnosis, with some limited success.

Four in 10 Americans think AI could also help providers make fewer mistakes, which are a serious problem in health care. A 2022 study found that medical errors cost about $20 billion a year and result in about 100,000 deaths each year.

Some Americans also think AI may be able to build more equity into the health care system.

Studies have shown that most providers have some form of implicit bias, with more positive attitudes toward White patients and negative attitudes toward people of color, and that could affect their decision-making.

Among the survey participants who understand that this kind of bias exists, the predominant view was that AI could help when it came to diagnosing a disease or recommending treatments, making those decisions more data-driven.

Tyson said that when people were asked to describe in their own words how they thought AI would help fight bias, one participant cited class bias: They believed that, unlike a human provider, an AI program wouldn’t make assumptions about a person’s health based on the way they dressed for the appointment.

“So this is a sense that AI is more neutral or at least less biased than humans,” Tyson said. However, AI is developed with human input, so experts caution that it may not always be entirely without bias.

Pew’s earlier surveys about artificial intelligence have found a general openness to AI, he said, particularly when it’s used to augment, rather than replace, human decision-making.

“AI as just a piece of the process in helping a human make a judgment, there is a good amount of support for that,” Tyson said. “Less so for AI to be the final decision-maker.”

For years, radiologists have used AI to analyze x-rays and CT scans to look for cancer and improve diagnostic capacity. About 30% of radiologists use AI as a part of their practice, and that number is growing, a survey found – but more than 90% in that survey said they wouldn’t trust these tools for autonomous use.

Dr. Victor Tseng, a pulmonologist and medical director of California-based Ansible Health, said that his practice is one of many that have been exploring the AI program ChatGPT. His group has set up a committee to look into its uses and to discuss the ethics around using it so the practice could set up guardrails before putting it into clinical practice.

Tseng’s group published a study this month that showed that ChatGPT could correctly answer enough practice questions that it would have passed the US Medical Licensing Examination.

Tseng said he doesn’t believe that AI will ever replace doctors, but he thinks technology like ChatGPT could make the medical profession more accessible. For example, a doctor could ask ChatGPT to simplify complicated medical jargon so that someone with a seventh-grade education could understand.

“AI is here. The doors are open,” Tseng said.

The Pew survey findings suggest that attitudes could shift as more Americans become more familiar with artificial intelligence. Survey respondents who were more familiar with a technology were more supportive of it, but they still shared caution that doctors could move too quickly in adopting it.

“Whether you’ve heard a lot about AI, just a little or maybe even nothing at all, all of those segments of the public are really in the same space,” Tyson said. “They echo this sentiment of caution of wanting to move carefully in AI adoption in health care.”

Source link

#Americans #uncomfortable #artificial #intelligence #health #care #survey #finds #CNN

Only 5.7% of US doctors are Black, and experts warn the shortage harms public health | CNN



CNN
 — 

When being truly honest with herself, Seun Adebagbo says, she can describe what drove her to go to medical school in a single word: self-preservation.

Adebagbo, who was born in Nigeria and grew up in Boston, said that as a child, she often saw tensions between certain aspects of Western medicine and beliefs within Nigerian culture. She yearned to have the expertise to bridge those worlds and help translate medical information while combating misinformation – for her loved ones and for herself.

“I wanted to go into medicine because I felt like, ‘Who better to mediate that tension than someone like me, who knows what it’s like to exist in both?’ ” said Adebagbo, 26, who graduated from Stanford University and is now a third-year medical school student in Massachusetts.

“The deeper I got into my medical education, the more I realized, if I’m in the system, I know how it works. I not only know the science, but I also know how the system works,” she said of how in many Black and brown communities, there can be limited access to care and resources within the medical system.

This has enabled Adebagbo to connect with patients of color in her rotations. She recognizes that their encounters with her are brief, she said, and so she tries to empower them to advocate for themselves in the health system.

“I know what to ask for on the patient side if I’m worried about something for myself. But then also, for my parents and my family,” Adebagbo said. “Because the way you have to move in the system as a Black person is very different, especially if you’re coming from a background where you don’t have family members that are doctors, you don’t know anyone in your periphery that went into medicine.”

Seun Adebagbo presenting her poster presentation as a first author at an international symposium and annual meeting of the American Academy of Facial Plastic and Reconstructive Surgery.

Only about 5.7% of physicians in the United States identify as Black or African American, according to the the latest data from the Association of American Medical Colleges. This statistic does not reflect the communities they serve, as an estimated 12% of the US population is Black or African American.

And while the proportion of Black physicians in the US has risen over the past 120 years, some research shows, it’s still extremely low.

One reason why the percentage of US doctors who are Black remains far below that of the US population that is Black can be traced to how Black people have been “historically excluded from medicine” and the “institutional and systemic racism in our society,” said Michael Dill, the Association of American Medical Colleges’ director of workforce studies.

“And it occurs over the course of what I think of as the trajectory to becoming a physician,” Dill said. At young ages, exposure to the sciences, science education resources, mentors and role models all make it more likely that a child could become a doctor – but such exposures and resources sometimes are disproportionately not as accessible in the Black community.

“We can improve our admissions to medical school, make them more holistic, try to remove bias from that, but that’s still not going to solve the problem,” Dill said.

“We need to look at which schools produce the most medical students and figure out how we improve the representation of Black students in those schools,” he said. “That requires going back to pre-college – high school, middle school, elementary school, kindergarten, pre-K – we need to do better in all of those places in order to elevate the overall trajectory to becoming a physician and make it more likely that we will get more Black doctors in the long run.”

Many US medical schools have a history of not admitting non-Whites. The first Black American to hold a medical degree, Dr. James McCune Smith, had to enroll at the University of Glasgow Medical School in Scotland.

Smith received his MD in 1837, returned to New York City and went on to become the first Black person to own and operate a pharmacy in the United States, and to be published in US medical journals.

A few decades later, in 1900, 1.3% of physicians were Black, compared with 11.6% of the US population, according to a study published in the Journal of General Internal Medicine in 2021.

Around that time, seven medical schools were established specifically for Black students between 1868 and 1904, according to Duke University’s Medical Center Library & Archives. But by 1923, only two of those schools remained: Howard University Medical School in Washington and Meharry Medical School in Nashville.

In 1940, only 2.8% of physicians were Black, but 9.7% of the US population was Black; by 2018, 5.4% of physicians were Black, but 12.8% of the population was Black.

“The more surprising thing to me was for Black men,” said Dr. Dan Ly, an author of the study in the Journal of General Internal Medicine and assistant professor of medicine at the University of California, Los Angeles.

Data on only Black men who were physicians over the years showed that they represented 1.3% of the physician workforce in 1900, “because all physicians were pretty much men in the past,” Ly said. Black men represented 2.7% of the physician workforce in 1940 and 2.6% in 2018.

“That’s 80 years of no improvement,” Ly said. “So the increase in the percent of physicians who were Black over the past 80 years has been the entrance of Black women in the physician workforce.”

Over more than four decades between 1978 and 2019, the proportion of medical school enrollees who identify as Black, Hispanic or members of other underrepresented groups has stayed “well below” the proportions that each group represented in the general US population, according to a 2021 report in The New England Journal of Medicine.

Diversity in some medical schools also was affected in states with bans on affirmative action programs, according to a study published last year in the Annals of Internal Medicine. That study included data on 21 public medical schools across eight states with affirmative action bans from 1985 to 2019: Arizona, California, Florida, Michigan, Nebraska, Oklahoma, Texas and Washington.

The study found that the percentage of enrolled students from underrepresented racial and ethnic groups was on average about 15% in the year before the bans were implemented but fell more than a third by five years after the bans.

Now, the United States is reckoning with medicine’s history of racism.

In 2008, the American Medical Association, the nation’s largest organization of physicians, issued an apology for its history of discriminatory policies toward Black doctors, including those that effectively restricted the association’s membership to Whites. In 2021, the US Centers for Disease Control and Prevention declared racism a “serious public health threat.”

One encouraging datapoint says that the number of Black or African American first-year medical school students increased 21% between the academic years of 2020 and 2021, according to the Association of American Medical Colleges, which Dill said shows promise for the future.

“Does the fact that it’s higher in medical school mean that eventually we will have a higher percentage of physicians who are Black? The answer is yes,” he said.

“We will see the change occur slowly over time,” he said. “So, that means the percentage of the youngest physicians that are Black will grow appreciably, but the percentage of all physicians who are Black will rise much more slowly, since new physicians are only a small percentage of the entire workforce.”

But some medical school students could leave their career track along the way. A paper published last year in JAMA Internal Medicine found that among a cohort of more than 33,000 students, those who identified as an underrepresented race or ethnicity in medicine – such as Black or Hispanic – were more likely to withdraw from or be forced out of school.

Among White students, 2.3% left medical school in the academic years of 2014-15 and 2015-16, compared with 5.2% of Hispanic students, 5.7% of Black students and 11% of American Indian, Alaska Native, Native Hawaiian and Pacific Islander students, the study found.

The researchers wrote in the study that “the findings highlight a need to retain students from marginalized groups in medical school.”

During her surgical rotation in medical school, Adebagbo said, she saw no Black surgeons at the hospital. While having more physicians and faculty of color in mentorship roles can help retain young Black medical school students like herself, she calls on non-Black doctors and faculty to create a positive, clinical learning environment, giving the same support and feedback to Black students as they may provide to non-Black students – which she argues will make a difference.

“Despite the discomfort that may arise on the giver of feedback’s side, it’s necessary for the growth and development of students. You’re hurting that student from becoming a better student on that rotation, not giving them that situational awareness that they need,” she said. “That’s what ends up happening with students of color. No one tells them, and it seems as if it’s a pattern, then by the end of the rotation, it becomes, ‘Well, you’ve made so many mistakes, so we should just dismiss you [for resident trainees] or we can’t give you honors or high pass [for medical students].’ “

Seun Adebagbo, right, with the site director (second from left) and two peers on her last day of her surgery rotation.

Adebagbo says she had one site director, a White male physician, during her surgery rotation who genuinely cared, listened and wanted to see her grow as a person and physician.

“He has been the first site director who has legit listened to me, my experiences navigating third year as a Black woman and tried to understand and put it in perspective – a privilege I’m not afforded often,” Adebagbo said. “He made making mistakes, growing and learning from them a safe and non-traumatizing experience. Not everyone may understand the depths of what I’m saying, but those who do will understand why I was so grateful for that experience.”

But not all attending physicians are like her “mentor,” as she calls him.

For Dr. David Howard, one question haunted his thoughts in medical school.

During those strenuous days at Johns Hopkins University, when all-night study sessions and grueling examinations were the norm, his mind whispered: Where do I fit?

Howard, now a 43-year-old ob/gyn in New Jersey, reflects with pride – and candor – on the day in 2009 when he completed his doctoral degrees, becoming both an MD and a PhD.

At the time, “I felt like I didn’t fit,” Howard said. “I’m sure I’m not the only person who has thought those thoughts.”

Howard was one of very few men in the obstetrics and gynecology specialty, where most providers were women – and he is Black. He saw very few peers who looked like him and extremely few faculty in leadership positions who looked like him.

“When you’re going through a really difficult training program, it makes a big difference if there are people like you in the leadership positions,” he said, adding that this contributes to the disproportionate number of Black medical school students and residents who decide to leave the profession or are “not treated equally” when they may make a mistake.

Early on in his career, Howard shifted his thinking from “Where do I fit?” to “How do I fit?”

He even authored a paper in 2017, published in the American Journal of Obstetrics and Gynecology, about this self-reflection.

“Only slightly different semantically, the second question shifts focus away from the ‘where’ that implies an existing location. Instead, ‘how’ requires me to illustrate my relationship with existing labels and systems, rather than within them, allowing a multitude of answers to my question of ‘how do I fit?’ ” Howard wrote.

“Despite the challenges and realities of the medical field today, I fit wherever and however I can, actively shaping my space and resisting the assumptions that first prompted me to ask where I fit,” he said. “To finally answer my question: I don’t fit, but I am here anyway.”

The United States has made “some progress” with diversity in both clinical medicine and research – but diversity in medicine is still not at the point where it needs to be, said Dr. Dan Barouch, a professor at Harvard Medical School and director of the Center for Virology and Vaccine Research at Beth Israel Deaconess Medical Center in Boston, who has been an advocate for diversity and inclusion.

That point, essentially, would be where diversity in the physician workforce reflects the diversity in their patient population.

“It’s particularly important to have a diverse physician workforce to aptly serve the patients,” Barouch said. “We want to increase diversity in academia as well, but it’s particularly important for doctors, because having a diverse workforce is critical for the best patient encounters, and to build trust.”

Service to patients and patient trust are both among the cornerstones critical to the status of public health, according to researchers.

One example of broken trust between physicians and Black patients happened in the 1930s, when the US Public Health Service and the Tuskegee Institute launched an unethical study in which researchers let syphilis progress in Black men without treating them for the disease. The study ended in 1972.

Among Black men, “there were declines in health utilization, increases in medical mistrust and subsequent increases in mortality for about the 10- to 15-year period following the disclosure event,” when the true nature of the study was exposed in 1972, said Dr. Marcella Alsan, an infectious disease physician and professor of public policy at Harvard Kennedy School.

Yet research suggests that when Black physicians are treating Black patients, that trust can be rebuilt.

For instance, the impact is so significant that having Black physicians care for Black patients could shrink the difference in cardiovascular deaths among White versus Black patients by 19%, according to a paper written by Alsan while she was attending Stanford University, along with colleagues Dr. Owen Garrick and Grant Graziani. It was published in 2019 in the American Economic Review.

That research was conducted in the fall and winter of 2017 and 2018 in Oakland, California, where 637 Black men were randomly assigned to visit either a Black or a non-Black male doctor. The visits included discussions and evaluations of blood pressure, body mass index, cholesterol levels and diabetes, as well as flu vaccinations.

The researchers found that, when the patients and doctors had the opportunity to meet in person, the patients assigned to a Black doctor were more likely to demand preventive health care services, especially services that were invasive, such as flu shots or diabetes screenings that involve drawing blood.

“We saw a dramatic increase in their likelihood of getting preventive care when they engage with Black physicians,” said Garrick, who now serves as chief medical officer of CVS Health’s clinical trial services, working to raise awareness of how more diverse groups of patients are needed to participate in clinical research.

Initially, “it didn’t look like there was a strong preference for Black doctors versus non-Black doctors. It was only when people actually had a chance to communicate with their physicians, talk about ‘Why should I be getting these preventative care services?’ ” Alsan said.

The researchers analyzed their findings to estimate that if Black men were more likely to undergo preventive health measures when they see a Black doctor, having more Black doctors could significantly improve the health and life expectancy of Black Americans.

The nation’s shortage of Black physicians is concerning, experts warn, as it contributes to some of the disproportionate effects that infectious diseases, chronic diseases and other medical ailments have on communities of color. This in itself poses public health risks.

For example, in the United States, Black newborns die at three times the rate of White newborns, but a study published in 2020 in the Proceedings of the National Academy of Sciences found that Black infants are more likely to survive if they are being treated by a Black physician.

Black men and Black women are also about six to 14.5 times as likely to die of HIV than White men and White women, partly due to having less access to effective antiretroviral therapies. But Black people with HIV got such therapies significantly later when they saw White providers, compared with Black patients who saw Black providers and White patients who saw White providers in a study published in 2004 in the Journal of General Internal Medicine.

And when Black patients receive care from Black doctors, those visits tend to be longer and have higher ratings of patients feeling satisfied, according to a separate study of more than 200 adults seeing 31 physicians, published in 2003 in the journal Annals of Internal Medicine.

“There’s plenty of evidence, and other research has shown that the more the workforce in a health care setting really reflects the community it serves, the more open the patient population is to recommendations and instructions from their doctor,” said Dr. Mahshid Abir, an emergency physician and a senior physician policy researcher at the RAND Corp., a nonpartisan research institution.

But it can be rare to find health systems in which the diversity of the workforce reflects the diversity of the patients.

During her 15-year career as an emergency physician, Abir said, she has worked in many emergency departments across the United States – in the Northeast, South and Midwest – and in each place, the diversity of the health care workforce did not mirror the patient populations.

This lack of diversity in medicine is “not talked about enough,” Abir said.

“The research that’s been conducted has shown that it makes a difference in how well patients do, how healthy they are, how long they live,” she said. “Especially at this juncture in history in the United States, where social justice is in the forefront, this is one of the most actionable places where we can make a difference.”

Source link

#doctors #Black #experts #warn #shortage #harms #public #health #CNN

Paging Dr. AI? What ChatGPT and artificial intelligence could mean for the future of medicine | CNN



CNN
 — 

Without cracking a single textbook, without spending a day in medical school, the co-author of a preprint study correctly answered enough practice questions that it would have passed the real US Medical Licensing Examination.

But the test-taker wasn’t a member of Mensa or a medical savant; it was the artificial intelligence ChatGPT.

The tool, which was created to answer user questions in a conversational manner, has generated so much buzz that doctors and scientists are trying to determine what its limitations are – and what it could do for health and medicine.

ChatGPT, or Chat Generative Pre-trained Transformer, is a natural language-processing tool driven by artificial intelligence.

The technology, created by San Francisco-based OpenAI and launched in November, is not like a well-spoken search engine. It isn’t even connected to the internet. Rather, a human programmer feeds it a vast amount of online data that’s kept on a server.

It can answer questions even if it has never seen a particular sequence of words before, because ChatGPT’s algorithm is trained to predict what word will come up in a sentence based on the context of what comes before it. It draws on knowledge stored on its server to generate its response.

ChatGPT can also answer followup questions, admit mistakes and reject inappropriate questions, the company says. It’s free to try while its makers are testing it.

Artificial intelligence programs have been around for a while, but this one generated so much interest that medical practices, professional associations and medical journals have created task forces to see how it might be useful and to understand what limitations and ethical concerns it may bring.

Dr. Victor Tseng’s practice, Ansible Health, has set up a task force on the issue. The pulmonologist is a medical director of the California-based group and a co-author of the study in which ChatGPT demonstrated that it could probably pass the medical licensing exam.

Tseng said his colleagues started playing around with ChatGPT last year and were intrigued when it accurately diagnosed pretend patients in hypothetical scenarios.

“We were just so impressed and truly flabbergasted by the eloquence and sort of fluidity of its response that we decided that we should actually bring this into our formal evaluation process and start testing it against the benchmark for medical knowledge,” he said.

That benchmark was the three-part test that US med school graduates have to pass to be licensed to practice medicine. It’s generally considered one of the toughest of any profession because it doesn’t ask straightforward questions with answers that can easily found on the internet.

The exam tests basic science and medical knowledge and case management, but it also assesses clinical reasoning, ethics, critical thinking and problem-solving skills.

The study team used 305 publicly available test questions from the June 2022 sample exam. None of the answers or related context was indexed on Google before January 1, 2022, so they would not be a part of the information on which ChatGPT trained. The study authors removed sample questions that had visuals and graphs, and they started a new chat session for each question they asked.

Students often spend hundreds of hours preparing, and medical schools typically give them time away from class just for that purpose. ChatGPT had to do none of that prep work.

The AI performed at or near passing for all the parts of the exam without any specialized training, showing “a high level of concordance and insight in its explanations,” the study says.

Tseng was impressed.

“There’s a lot of red herrings,” he said. “Googling or trying to even intuitively figure out with an open-book approach is very difficult. It might take hours to answer one question that way. But ChatGPT was able to give an accurate answer about 60% of the time with cogent explanations within five seconds.”

Dr. Alex Mechaber, vice president of the US Medical Licensing Examination at the National Board of Medical Examiners, said ChatGPT’s passing results didn’t surprise him.

“The input material is really largely representative of medical knowledge and the type of multiple-choice questions which AI is most likely to be successful with,” he said.

Mechaber said the board is also testing ChatGPT with the exam. The members are especially interested in the answers the technology got wrong, and they want to understand why.

“I think this technology is really exciting,” he said. “We were also pretty aware and vigilant about the risks that large language models bring in terms of the potential for misinformation, and also potentially having harmful stereotypes and bias.”

He believes that there is potential with the technology.

“I think it’s going to get better and better, and we are excited and want to figure out how do we embrace it and use it in the right ways,” he said.

Already, ChatGPT has entered the discussion around research and publishing.

The results of the medical licensing exam study were even written up with the help of ChatGPT. The technology was originally listed as a co-author of the draft, but Tseng says that when the study is published, ChatGPT will not be listed as an author because it would be a distraction.

Last month, the journal Nature created guidelines that said no such program could be credited as an author because “any attribution of authorship carries with it accountability for the work, and AI tools cannot take such responsibility.”

But an article published Thursday in the journal Radiology was written almost entirely by ChatGPT. It was asked whether it could replace a human medical writer, and the program listed many of its possible uses, including writing study reports, creating documents that patients will read and translating medical information into a variety of languages.

Still, it does have some limitations.

“I think it definitely is going to help, but everything in AI needs guardrails,” said Dr. Linda Moy, the editor of Radiology and a professor of radiology at the NYU Grossman School of Medicine.

She said ChatGPT’s article was pretty accurate, but it made up some references.

One of Moy’s other concerns is that the AI could fabricate data. It’s only as good as the information it’s fed, and with so much inaccurate information available online about things like Covid-19 vaccines, it could use that to generate inaccurate results.

Moy’s colleague Artie Shen, a graduating Ph.D. candidate at NYU’s Center for Data Science, is exploring ChatGPT’s potential as a kind of translator for other AI programs for medical imaging analysis. For years, scientists have studied AI programs from startups and larger operations, like Google, that can recognize complex patterns in imaging data. The hope is that these could provide quantitative assessments that could potentially uncover diseases, possibly more effectively than the human eye.

“AI can give you a very accurate diagnosis, but they will never tell you how they reach this diagnosis,” Shen said. He believes that ChatGPT could work with the other programs to capture its rationale and observations.

“If they can talk, it has the potential to enable those systems to convey their knowledge in the same way as an experienced radiologist,” he said.

Tseng said he ultimately thinks ChatGPT can enhance medical practice in much the same way online medical information has both empowered patients and forced doctors to become better communicators, because they now have to provide insight around what patients read online.

ChatGPT won’t replace doctors. Tseng’s group will continue to test it to learn why it creates certain errors and what other ethical parameters need to be put in place before using it for real. But Tseng thinks it could make the medical profession more accessible. For example, a doctor could ask ChatGPT to simplify complicated medical jargon into language that someone with a seventh-grade education could understand.

“AI is here. The doors are open,” Tseng said. “My fundamental hope is, it will actually make me and make us as physicians and providers better.”

Source link

#Paging #ChatGPT #artificial #intelligence #future #medicine #CNN

Children’s mental health tops list of parent worries, survey finds | CNN



CNN
 — 

Forty percent of US parents are “extremely” or “very” worried that their children will struggle with anxiety or depression at some point, a new survey finds.

The Pew Research Center report said mental health was the greatest concern among parents, followed by bullying, which worries 35% of parents. These concerns trumped fears of kidnapping, dangers of drugs and alcohol, teen pregnancy and getting into trouble with the police.

Concerns varied by race, ethnicity and income level, with roughly 4 in 10 Latino and low-income parents and 3 in 10 Black parents saying they are extremely or very worried that their children could be shot, compared with about 1 in 10 high-income or White parents.

Nearly two-thirds of the respondents said that being a parent has been at least somewhat harder than they expected, about 41% say that being a parent is tiring, and 29% say it is stressful all or most of the time.

The report captured the perceptions of a nationally representative sample of 3,757 US parents whose children were younger than 18 in 2022.

Experts say mental health issues among children and adolescents have skyrocketed in recent years.

“I would say over the last 10 years, since I’ve been practicing as a general pediatrician, I have seen a shift both in the amount of patients and of all ages dealing with anxiety and depression. And their parents being concerned about this is a key issue,” said Dr. Katherine Williamson, a pediatrician and spokesperson for the American Academy of Pediatrics. “Even before the pandemic, we were seeing skyrocketing numbers of kids and adolescents dealing with mental health issues, and that has increased exponentially since the pandemic.”

Suicide became the second leading cause of death among children 10 to 14 during the Covid-19 pandemic, according to the US Centers for Disease Control and Prevention. Mental health-related emergency room visits among adolescents 5 to 11 and 12 to 17 also jumped 24% and 31%, respectively.

Many parents feel helpless when their children have mental health issues because they don’t feel equipped to offer support in this area.

“They are unable to relieve [mental health issues] and address that as they could if they were struggling with their grades or other things that seem more traditional to for kids to struggle with,” said Allen Sabey, a family therapist at the Family Institute at Northwestern University.

Parents trying to “work out and look at and connect with their own feelings will give them important information about what feels off or OK for their kid,” he said.

When it comes to anxiety and depression in children, pediatricians say, parents can watch for signs like decreased interest or pleasure in things they previously enjoyed, poor self-esteem and changes in mood, appetite or sleep.

Experts also say parents should consider the amount and content of social media their child consumes, as research has found that it can have negative effects on their mental health.

But, they say, having more parents recognize the importance of mental health in children is a step in the right direction.

“I have always felt there’s been so much resistance to seeking care for mental health among the population that I serve. And I am actually happy that since the Covid pandemic, at least people now are recognizing this as a very key and important health need,” said Dr. Maggi Smeal, a pediatrician at Stanford Medicine Children’s Health.

Smeal hopes that “all people that are interacting with children can be aware of these issues and feel empowered to identify and advocate for these children, to tell them to go to their primary care provider and have an assessment just like you do if your kid has a cough or a fever or ear infection.”

The number of parents concerned about gun violence reflects the fact that guns are the leading cause of death among children in the US, research has showed. From 2019 to 2020, the rate of firearm-related deaths increased 29.5% – more than twice the increase as in the general population.

“Gun violence is a real risk to our kids today. And that is both being killed by somebody else as well as suicide in the face of the mental health issues that we’re seeing today,” Williamson said.

The survey found that Black, Hispanic and lower-income parents were most likely to be concerned about gun violence, a finding that’s consistent with the communities most affected. Research has shown that from 2018 to 2021, the rate of firearm-related deaths doubled among Black youth and increased 50% among Hispanic youth. Another study found that children living in low-income areas are at higher risk of firearm-related death.

Direct and indirect exposure to gun violence can contribute to mental health problems.

“Even if they hear gunshots in their community, they hear adults talking, there’s all different ways that children are traumatized and victimized by gun violence. And what we see is all the symptoms of anxiety in even the youngest of children. We see children with somatic complaints – stomachaches, headaches. They have post-traumatic stress disorder,” Smeal said.

Most of the parents in the survey said parenting is harder than they expected, and that they feel judgment from various sources.

“The findings of this of this report were, as a pediatrician and a parent, just exactly what you would expect. Parenting is the hardest thing you’ll ever do, and there are very high levels of stress and fatigue, especially in the parents of young children,” Smeal said.

One of the best things parents can do is lean on fellow parents, experts say.

“The main challenge for parents is our siloed independent nature sometimes, and so we want to find people who we trust and kind of work towards being more vulnerable and open with,” Sabey said. “To where it’s like not just you and your kid, but it’s a kind of a group of people caring and working together.”

Pediatricians emphasize that no parent is perfect and that the most important thing you can do is to just be there for your child.

“We know that the best chance for a child to be successful and happy is for them to have at least one person in their life who believes in them and advocates for them. So I think it’s important for parents to know that there’s no such thing as a perfect parent, because we are all human, and humans are imperfect by nature, but that is OK,” Williamson said.

A parent’s job is to “really make sure that they know how important they are and they have a voice in this world,” she said. “Every child will have their own unique struggles, whether it is academically, emotionally, physically. Our job is to help them with the areas [where] they struggle, but even more, help them recognize their strengths.”

Source link

#Childrens #mental #health #tops #list #parent #worries #survey #finds #CNN

Recently identified inflammatory disease VEXAS syndrome may be more common than thought, study suggests | CNN



CNN
 — 

David Adams spent half a decade fighting an illness he couldn’t name. He was in and out of the hospital several times per year. His inflamed joints made his hands feel like they had been squeezed into gloves – and he could no longer play his beloved classical and jazz guitars.

He had constant fevers and fatigue. He even developed pain and swelling in his genitalia, which was his first sign that something was really wrong.

“At the turn of the year 2016, I started with some really painful effects in the male anatomy,” said Adams, now 70. “After that, again, a lot of fatigue – my primary care physician at that point had blood tests done, and my white blood cell count was very, very low.”

Next, Adams, who lives in Alexandria, Virginia, saw a hematologist, a pulmonologist, a urologist, a rheumatologist and then a dermatologist. Some of them thought he might have cancer.

Adams’ symptoms continued, with even more fatigue, pneumonia and a large rash below his waist. He tried at least a dozen medications, saw about two dozen doctors, and nothing helped.

In 2019, worsening symptoms forced him to retire early from his decades-long career in clinical data systems. But he remained in the dark about what was causing the problems.

Finally, in 2020, scientists at the National Institutes of Health discovered and named a rare genetic disorder: VEXAS syndrome, which wreaks havoc on the body through inflammation and blood problems.

Adams had an appointment with his rheumatologist at the time, and when he walked into the office, he saw that his physician “was giddy like a little kid.”

In his doctor’s hands was a copy of a paper in the New England Journal of Medicine detailing the discovery of VEXAS syndrome.

Adams had his answer.

“For the first time, there was a one-to-one correlation of symptoms,” he said. “It was quite a shock.”

An estimated 1 in about 13,500 people in the United States may have VEXAS syndrome, a new study suggests, which means the mysterious and sometimes deadly inflammatory disorder may be more common than previously thought.

In comparison, the genetic disorder spinal muscular atrophy affects about 1 in 10,000 people and Huntington’s disease occurs in about 1 in every 10,000 to 20,000 people.

Since its discovery, occasional VEXAS cases have been reported in medical research, but the study reveals new estimates of its prevalence.

The research, published Tuesday in the journal JAMA, suggests that about 1 in 13,591 people in the US have mutations in the UBA1 gene, which develop later in life and cause VEXAS syndrome.

“This study is demonstrating that there’s likely tens of thousands of patients in the US that have this disease, and the vast majority of them are probably not being recognized because physicians aren’t really considering this as a diagnosis more broadly,” said Dr. David Beck, an assistant professor in the Department of Medicine at NYU Langone Health and a lead author of the study.

VEXAS syndrome is not inherited, so people who have it don’t pass the disease to their children. But the UBA1 gene is on the X chromosome, so the syndrome is an X-linked disease. It predominantly affects men, who carry only one X chromosome. Women have two X chromosomes, so if they have a mutation in a gene on one X chromosome but not the other, they are generally unaffected.

“It’s present in 1 in 4,000 men over the age of 50. So we think it’s a disease that should be thought about in terms of testing for individuals that have the symptoms,” said Beck, who also led the federal research team that identified the shared UBA1 mutation among VEXAS patients in 2020.

“The benefit of VEXAS syndrome is that we have a test. We have a genetic test that can help directly provide the diagnosis,” he said. “It’s just a question of patients who meet the criteria – who are older individuals with systemic inflammation, low blood counts, who really aren’t responding to anything but steroids – then advocating to their doctors to get genetic testing to get a diagnosis.”

Adams, who became a patient of Beck’s, said that finally getting a diagnosis – and understanding the cause of his symptoms – was life-changing.

“It really was incredibly freeing to have the diagnosis,” he said.

“You can’t fight your enemy unless your enemy has a name,” he added. “We finally had something where we could point to and say, ‘OK, we understand what’s going on. This is VEXAS.’ “

For the new study, Beck and his colleagues at the NIH, New York University, Geisinger Research and other institutions analyzed data on 163,096 patients in a health system in central and northeastern Pennsylvania, from January 1996 to January 2022, including electronic health records and blood samples.

Eleven of the patients had a disease-causing UBA1 variant, and a 12th person had a “highly suspicious” variant.

Only three of the 12 are still alive. A five-year survival rate of 63% has been previously reported with VEXAS.

Among the 11 patients in the new study who had pathogenic variants in UBA1, only two were women. Seven had arthritis as a symptom, and four had been diagnosed with rheumatologic diseases, such as psoriasis of the skin or sarcoidosis, which causes swollen lumps in the body. All had anemia or low blood cell counts.

“None had been previously clinically diagnosed with VEXAS syndrome,” Beck said.

The finding “is emphasizing how it’s important to be able to pick these patients out, give them the diagnosis and start the aggressive therapies or aggressive treatments to keep their inflammation in check,” he said.

VEXAS – an acronym for five clinical characteristics of the disease – has no standardized treatment or cure, but Beck said symptoms can be managed with medications like the steroid prednisone or other immunosuppressants.

“But the toxicities of prednisone over years is challenging. There are other anti-inflammatory medications that we use, but they’re only partially effective at the moment,” he said. “One treatment for individuals that we’ve seen that’s very effective is bone marrow transplantation. That comes with its own risks, but that’s just underscoring the severe nature of the disease.”

Although the new study helps provide estimates of the prevalence and symptoms of VEXAS syndrome, the data is not representative of the entire United States, and Beck said that more research needs to be done on a larger, more diverse group of people.

Some men might be hesitant to seek medical care for VEXAS symptoms, but Adams said that doing so could save their life.

“Eventually, it’s going to get so bad that you’ll end up like my first hospitalization, where you’re on death’s door,” Adams said. “You don’t want to be in that situation.”

Adams has been taking prednisone to ease his symptoms, and it’s helped. But because steroid use can have side effects such as cataracts and weight gain, he has been working with his doctors to find other therapies so he can reduce his intake of the medication.

Beck and his colleagues are studying targeted therapies for VEXAS syndrome, as well as conducting stem cell bone marrow transplant trials at the NIH.

“There are many different facets of the disease,” Dr. Bhavisha Patel, a hematologist and researcher in the National Heart, Lung and Blood Institute’s Hematopoiesis and Bone Marrow Failure Laboratory, said in an NIH news release last month.

“I believe that is what is challenging when we think about treatment, because it’s so heterogeneous,” said Patel, who was not involved in the new study.

“Both at NIH and worldwide, the groups that have dedicated themselves to VEXAS are looking for medical therapies to offer to other patients who don’t qualify for a bone marrow transplant,” she said. “We continue to collaborate on many projects in order to categorize this disease further and ultimately come up with the best treatment options.”

Source link

#identified #inflammatory #disease #VEXAS #syndrome #common #thought #study #suggests #CNN

Pediatricians are giving out free gun locks to approach the gun violence epidemic as a public health crisis | CNN



CNN
 — 

In a triage waiting room of St. Louis Children’s Hospital in Missouri, a clear basket filled with gun locks sits near the walkway, just noticeable enough to those passing by.

The hospital staff calls it the “No Questions Asked” basket, to encourage gun safety without having to confront gun owners about what can be a sensitive and divisive topic. It holds an assortment of cable gun locks free of charge, available to those who need them, alongside pamphlets explaining how to properly and safely store firearms.

The initiative, aimed at reducing the stigma of addressing gun safety, is part of a growing effort by medical professionals who are treating the country’s gun violence epidemic as a public health crisis.

“It takes standing at the bedside of one child who has been shot to realize that we all have to do more and as the leading cause of death for children in this country, pediatricians need to be front and center of the solution, of all the solutions,” said Dr. Annie Andrews, a professor of pediatrics at the Medical University of South Carolina and an expert on gun violence prevention.

Over the course of two years, thousands of gun locks have been taken from the basket, according to Dr. Lindsay Clukies, a pediatric emergency medicine physician at the hospital.

In the coming weeks, baskets filled with free gun locks will be available at more than 17 locations operated by BJC HealthCare, an organization serving metro St. Louis, mid-Missouri and Southern Illinois, Clukies said. It’s a low-cost and effective way to easily distribute firearm safety devices.

“We’ve had employees as well as patients take our locks, also their families and even a grandmother who took one for her grandson. It’s for anyone who needs them,” Clukies told CNN. In recent years, a rising number of pediatricians across the country have been engaging with the topic of gun safety in medical settings by focusing on safety and prevention, already a natural aspect of their work.

During patient visits, it’s increasingly common for pediatricians to ask the patient’s parents if there are guns at home, and if so, how they are stored. Some hospitals then offer free gun locks, often sourced from donations or police departments and paired with safe storage education.

Some pediatricians, who bear witness to the effects of gun violence on children in their workplace every day, told CNN they see it as their obligation as medical professionals to be part of the solution to the epidemic.

In 2022, 1,672 children and teenagers under 17 were killed by gun violence and 4,476 were injured, according to the Gun Violence Archive, a nonprofit organization tracking injuries and deaths by gunfire since 2014.

“We have just as an important voice in this conversation as anyone else because we’re the ones who have invested our entire careers to protecting children and ensuring that children can grow up to be the safest healthiest version of themselves,” said Andrews.

“It is only natural that we see these things that we understand that they’re preventable, and we want to get involved in finding the solutions,” she added.

So far in 2023, high-profile incidents of children accessing firearms have heeded calls for stronger, more consistent laws nationwide, requiring adults to safely secure their guns out of the reach of children and others unauthorized to use them. They have also highlighted a lack of public education on the responsibility of gun owners to store their guns unloaded, locked and away from ammunition, CNN previously reported.

In early January, a 6-year-old boy was taken into police custody after he took a gun purchased by his mother from his home, brought it to school and shot his teacher at Richneck Elementary School in Newport News, Virginia, police said. Just over a week later, a man was arrested in Beech Grove, Indiana, after video was shown on live TV of a toddler, reportedly the man’s son, waving and pulling the trigger of a handgun, CNN previously reported.

Hundreds of children in the US every year gain access to firearms and unintentionally shoot themselves or someone else, according to research by Everytown for Gun Safety, a leading non-profit organization focusing on gun violence prevention. In 2022, there were 301 unintentional shootings by children, resulting in 133 deaths and 180 injuries nationally, Everytown data showed.

Firearm injuries are now the leading cause of death among people younger than 24 in the United States, according to the Centers for Disease Control and Prevention. The American Academy of Pediatrics released an updated policy statement in October 2022, stating firearms are now the leading cause of death in children under the age of 24 in the US.

The Academy’s statement urged a “multipronged approach with layers of protection focused on harm reduction, which has been successful in decreasing motor vehicle-related injuries, is essential to decrease firearm injuries and deaths in children and youth.”

The Academy has free educational modules for pediatricians to guide them on how to have what can be challenging or uncomfortable conversations about firearms with families, according to Dr. Lois Kaye Lee, a pediatrician and the chair of the Academy’s Council on Injury, Violence and Poison Prevention.

“This shouldn’t be considered as something extra; it should be considered as part of the work that we do every day around injury prevention, be it around firearms, child passenger safety and suicide prevention,” Lee said.

Dr. Georges Benjamin, executive director of the American Public Health Association, told CNN the public health approach to addressing gun violence removes the politics from the issue and “puts it into a scientific evidence-based framework.”

“Physicians have a unique opportunity to engage their patients, the parents of kids or the parents themselves as individuals to make their homes safer,” Benjamin said. “We already do this for toxins under our kitchen cabinets, razor blades and outlets in the wall.”

In the emergency department at St. Louis Children’s Hospital, all patients are screened for access to firearms and offered free gun locks, as well as safe storage education, Clukies said. Gun locks can also be mailed to families, free of cost, through the hospital’s website.

“Every patient that comes into our emergency department, whether it’s for a fever or a cold or a broken arm, is asked about access to firearms,” said Clukies, adding 5,000 locks have been given out since the initiatives were started in 2021.

In a collaborative effort between trauma nurses, physicians, social workers, violence intervention experts and family partners, the hospital created a “nonjudgmental” script for doctors to follow as they ask patients about access to firearms, Clukies said.

During the screening process, pediatricians will ask parents or caretakers questions such as: Do you have access to a firearm where your child lives or plays? How is it stored? Is it stored unloaded or loaded?

“When I first started doing this, I would say, ‘Are there any guns in the home? Yes, or no?’ But I have found and learned from other experts that if you just say, ‘If there are any guns in the home, do you mind telling me how they’re secured?’ it takes away the judgment,” said Andrews, a pediatrician whose hospital, the Medical University of South Carolina, also offers free gun locks to patients.

An assortment of cable gun locks offered free of charge by the Medical University of South Carolina.

Families are asked about firearms in the “social history” phase of a patient visit, during which pediatricians will ask who lives in the home, what grade the child is in, what activities they engage in and where the child goes to school, according to Andrews. When parents indicate their firearms are not safely stored, like on the top of a shelf or in a nightstand drawer, Andrews said those are important opportunities for intervention and education about storage devices such as keypad lockboxes, fingerprint biometric safes and other types of lock systems.

It’s also important for pediatricians to understand the parents’ or caretakers’ motivation for owning a firearm to “inform the conversation about where they’re willing to meet you as far as storage goes,” she added.

Andrews and Clukies said they were pleasantly surprised by the willingness of families to discuss firearm safety, most of whom recognize it is an effort to protect their children.

“I expected more pushback than we received, which is attributed to us really focusing on how we properly word these questions,” Clukies said. “I think it’s because we turn it into a neutral conversation, and we focus on safety and prevention.”

Andrews added it is uncommon for medical schools or residencies to discuss gun violence prevention, which she says is due to the “politics around the issue.”

“Thankfully, that has evolved, and more and more pediatricians are realizing that we have to be an integral part of the solution to this problem,” Andrews said.

At the St. Louis Children’s Hospital, pediatricians followed up with patients who received a free gun lock in a research study roughly two months after they launched the initiative in the fall of 2021 to see if their storage practices changed.

The study found two-thirds of families reported using the gun lock provided to them by the hospital and there was a “statistically significant decrease” in those who didn’t store their firearms safely, as well as an increase in those who stored their firearms unloaded, according to Clukies.

But there is still much more work to be done in the medical community to fight the gun violence epidemic and scientific research on the issue is “woefully underfunded,” Andrews contended.

According to the American Public Health Association’s Benjamin, a multidisciplinary approach by policymakers, law enforcement and the medical community is essential to fostering a safer environment for children.

“Injury prevention is a core part of every physician’s job,” Benjamin said. “It’s clearly in our lane.”

Source link

#Pediatricians #giving #free #gun #locks #approach #gun #violence #epidemic #public #health #crisis #CNN

Millions have the same ‘bendy body’ disease as my daughter. Why isn’t the medical profession paying more attention? | CNN



CNN
 — 

One day in July 2021, my then 15-year-old daughter Poppy stumbled and fell while walking down some stairs, grazing her knee. It wasn’t a serious wound, but over the weeks it didn’t heal.

Around the same time, her wrists and knees became sore; her ankles started rolling when she walked; her hands began shaking; her headaches and stomach aches became more frequent and intensely painful. She was always exhausted.

Before her health declined, Poppy had enjoyed horse riding and gymnastics, she’d competed in cross country races and been a fearless goalkeeper for the school hockey team.

But within a couple of months, as walking became increasingly difficult, she asked me for a walking stick. We found one that folds up and fits neatly in her school bag.

I took Poppy to doctors who conducted tests, but they couldn’t find out what was wrong with her. Then, in October, a breakthrough.

A podiatrist who was measuring Poppy for insoles to support her aching feet asked if Poppy could bend her thumb to reach her forearm. She could. Could she pull her little finger back to form a 90-degree angle with the back of her hand? She could do that, too.

“Have you heard of Ehlers-Danlos syndrome?” the podiatrist asked me. I hadn’t – so as soon as I got home, I went looking on the internet.

There are 13 types of Ehlers-Danlos syndrome (EDS), according to research and advocacy organization The Ehlers-Danlos Society. Most types are very rare, and can be diagnosed using genetic tests. However, the genes that cause hypermobile EDS (hEDS) – the most common form, accounting for about 90% of cases – are unknown, so diagnosis is based on a checklist of symptoms. The list includes a hypermobility rating, known as the Beighton Score.

Poppy had enough symptoms to qualify for hEDS, and the diagnosis was confirmed by a doctor one year ago, on Christmas Eve. He told us that although we can do our best to alleviate some symptoms, there is no cure.

Poppy reacted to the news better than I did. She had known for some time that something was fundamentally wrong. The diagnosis was upsetting but identifying her illness also gave her a sense of relief. I felt shocked and overwhelmed, and I cried for weeks.

Reading about EDS was like a dreadful slow reveal.

I learned that it’s a genetic disorder that causes the body to make faulty connective tissue, and connective tissue is everywhere – in the tendons, ligaments, skin, heart, digestive system, eyes and gums.

Weak connective tissue leads to hypermobility, which may sound like a good thing, but some people with bendy bodies suffer a mind-boggling array of symptoms, including joint dislocations and subluxations (like a mini dislocation, when the joint partially slips out of place), soft stretchy skin, abnormal scarring, poor wound healing, gastrointestinal disorders, chronic pain and fatigue.

The severity of symptoms varies wildly. Patients with milder cases can lead relatively normal lives, while others become housebound, and some can’t digest food and must be fed through tubes.

What’s more, people with hEDS are prone to other conditions, including POTS (postural orthostatic tachycardia syndrome, which makes you dizzy when you stand up) and MCAS (mast cell activation syndrome, which gives you allergy-type symptoms).

I learned a lot of new acronyms and they all spelled bad news.

I initially thought hEDS was rare, because all forms of EDS are commonly referred to as rare. But within a few weeks, I felt like I was seeing references to hEDS everywhere. Actor, writer and director Lena Dunham; actor and presenter Jameela Jamil; and drag queen Yvie Oddly live with it. I deep dived into EDS Twitter and EDS Instagram, while Poppy found it comforting to watch TikTok videos made by teenagers with the condition.

I discovered multiple patient groups on Facebook, each with tens of thousands of members, which turned out to be great sources of support. I asked questions (what kind of shoes are best for weak ankles? Which knee braces are easiest to pull on and off?) and kind strangers sent helpful advice. At the same time, scrolling through countless personal stories of pain, despair and shattered dreams made me feel terrified about what might lie ahead.

I noticed common themes. Many EDS patients had spent years seeking the correct diagnosis; others felt they’d been neglected and gaslit by doctors.

There was also a lot of talk of zebras.

Linda Bluestein, a Colorado-based physician who specializes in EDS and other hypermobility conditions, and has hEDS herself, explains why.

“I was told in medical school, ‘when you hear hoofbeats think horses, not zebras,’” she says. Many trainee doctors receive the same advice – when a patient presents with symptoms, “look for the common thing.” That’s why EDS patients commonly refer to themselves as zebras – and also use the fabulous collective noun “dazzle.” The name represents rarity and evokes the stripy stretch marks that are a common feature on EDS skin.

But if people with hEDS are medical zebras, why am I encountering so many of them?

Bluestein says that for many years it was thought that one in 5,000 people had Ehlers-Danlos syndrome. But she says the limited research that’s been carried out into the prevalence of hEDS suggests the true number of cases is “much, much higher” than that.

Dr. Linda Bluestein has treated hEDS patients  who have been searching for a diagnosis for decades.

Bluestein points me to a 2019 study carried out in Wales – a country of 3.1 million people. An examination of primary care and hospital records from 1990 to 2017 found that one in 500 people there has either hEDS or joint hypermobility syndrome (a similar condition with a slightly different set of symptoms). She says it’s “a good study” but believes it’s still an underestimate. The Ehlers-Danlos Society says more population studies need to be done to give a more accurate view of its incidence elsewhere.

But despite this possible prevalence, and how debilitating hypermobility disorders can be, the average time to diagnosis from the onset of symptoms is 10 to 12 years, according to The Ehlers-Danlos Society.

Bluestein has firsthand experience of this. Growing up, she wanted to become a ballet dancer and trained six days a week. When puberty hit, she started experiencing joint pain and migraines, and at 16 had her first orthopedic surgery. She realized she wouldn’t succeed in the ballet world and instead pursued her “back-up plan,” to become a doctor. But despite her career choice, Bluestein only received her hEDS diagnosis when she was 47 – more than 30 years later.

“I told my doctor on numerous occasions, ‘there is something wrong with me, I don’t heal well, I get injured more easily than other people’,” she says. “And he just never, never listened.”

Why, for so many patients, does it take so long to get diagnosed?

In 2014 a leading EDS expert, Professor Rodney Grahame, remarked at a conference that “no other disease in the history of modern medicine has been neglected in such a way as Ehlers-Danlos syndrome.”

Far more women than men are diagnosed with EDS, which could help to explain the neglect, because the medical profession has a long history of overlooking health complaints made by women.

A 2009 study, conducted by the European Organisation for Rare Diseases, surveyed 414 families of EDS patients from five countries and found that the average delay to an EDS diagnosis was four years for men – but 16 years for women.

The report states that women with EDS tend to be “diagnosed later because their pain and hypotonia (poor muscle tone) aren’t considered as physical symptoms but rather as psychological symptoms or common complaints.”

“We tend to get dismissed a lot more easily,” says Bluestein. “People jump to the conclusion that we’re histrionic females.”

Anxiety is very common in patients with hypermobility issues, says Bluestein, which can cloud the picture. “When people with anxiety present to a physician, it can suck all the air out of the room, so that the physician almost can’t see anything else.”

This can ramp up the patient’s anxiety further “because people aren’t validating our symptoms, and then we start to doubt ourselves,” she says.

What’s more, medicine is divided into silos which creates the “worst possible model” for EDS patients, says Bluestein.

VIDEO THUMBNAIL Ehlers-Danlos Syndrome 1

‘We’re born with this and will never be free:’ Hear stories from people with Ehlers-Danlos syndrome

She explains that undiagnosed patients might consult a neurologist for their migraines, a rheumatologist for joint pain, a cardiologist for palpitations, a gastroenterologist for digestive issues and a urologist for bladder symptoms. Each doctor focuses on the symptoms that fall within their specialty but doesn’t consider the other ailments. “Nowhere along the way does somebody realize that there are certain conditions that could tie all of these things together and explain everything,” says Bluestein.

The 2009 rare diseases study found that during the quest for a diagnosis, 58% of EDS patients consulted more than five doctors, and 20% consulted more than 20.

The consequences of not getting diagnosed for years can be devastating.

Melissa Dickinson, a psychotherapist in Atlanta, Georgia, says she experienced symptoms of a “mystery illness” since childhood. Then in 2013, she “went on honeymoon to Mexico, relatively healthy, and came back disabled and with a dislocated neck.”

While on vacation, Dickinson says she got food poisoning and was prescribed ciprofloxacin, an antibiotic that can pose a serious risk of aortic aneurysm to people with EDS. Instead, she says it triggered significant nerve damage, digestive issues that almost made her go blind because her body wasn’t absorbing nutrients, and put her in a wheelchair.

Dickinson, who finally received her hEDS diagnosis in 2014, says taking the wrong medication “wrecked me from head to toe.” Now that she’s receiving treatment, “I can walk with mobility aids, but most of my body has to have constant support to function.”

Lara Bloom, president and CEO of The Ehlers-Danlos Society, who herself has hEDS, says many patients have “medicalized PTSD.”

“They have had to stop their careers, they’ve had to drop out of school, their relationships have broken down.” The delay inevitably results in worsening symptoms and a declining quality of life, she says. In worst-case scenarios, patients “are dying by suicide, they’re self-harming.”

Sometimes, the failure to diagnose EDS has led to children being taken away from their parents.

In 2010, Americans Rana Tyson and her husband Chad were falsely accused of harming their 4-week-old twin daughters, who had unexplained fractures in their legs.

Along with their older sister, the baby girls were taken by state authorities in Texas and sent to live with relatives. “It was the worst day of my life,” Tyson tells me in a phone call.

Five months later, a geneticist identified the twins as having a connective tissue disorder, and they were subsequently diagnosed with EDS and a vitamin D deficiency. The family was reunited but “12 years later, it still hurts,” says Tyson.

Bloom says some other parents of children with EDS have been wrongly accused of “fabricated or induced illness (FII)” – a rare form of abuse, formerly known as Munchausen’s syndrome by proxy, in which a parent or care giver deliberately causes symptoms or tries to convince doctors that a healthy child is ill.

Ellie Pattison, who has hEDS, has been repeatedly misdiagnosed as having an eating disorder.

Ellie Pattison, a 19-year-old student who lives in County Durham, England, suffers from severe digestive issues linked to hEDS.

Throughout her childhood, Ellie was repeatedly misdiagnosed as having an eating disorder, she says, while her mother Caroline was accused of FII on three separate occasions. Caroline successfully fought to keep her daughter at home, says Ellie, but the ordeal has left the whole family with “an unimaginable amount of trauma.” Ellie says she suffered from PTSD and endured years of horrific nightmares, triggered by living with the fear from a young age that she could be forcibly separated from her family.

This underlines why prompt diagnosis is so important, says Bloom. “Our hope and dream is for people to get diagnosed when their symptoms begin.”

In the case of hEDS, a crucial first step is to find out what causes it.

Cortney Gensemer, a biomedical scientist in the Norris Lab at the Medical University of South Carolina’s department of Regenerative Medicine and Cell Biology, is trying to solve this mystery. She and research mentor Russell Norris, head of the lab, have been studying a gene mutation they believe causes hEDS (the results of the study are currently under peer review).

Like Poppy, Gensemer was diagnosed with hEDS as a teenager. She says the disease affects every aspect of her work. Looking down a microscope is particularly painful at times – her neck is unstable because of her hEDS, and she’s had metal screws put into some of her neck vertebrae to fuse them.

Cortney Gensemer working in the Norris Lab and recovering from neck surgery earlier this year.

Norris kitted the lab out with special equipment, including motion sensor doors (standard lab doors are very heavy), adjustable chairs and ergonomic pipettes that are gentle on the hands. “If I didn’t have all that stuff, I don’t think I’d be able to do it,” says Gensemer.

To find a hEDS-causing gene, Gensemer says she and Norris sampled DNA from a large family with cases spanning four generations and looked for a mutation that appears only in relatives who have the disease. They identified a “strong candidate gene” and inserted it into mice using gene editing tools.

Gensemer and Norris found that the hEDS mice had significantly more lax tissues, and floppier tails than regular rodents. “You can tie a loose knot into the mutant mouse tail. With a normal mouse tail, you can (only) bend it into a circle,” Gensemer says.

The gene that Gensemer and Norris found won’t account for all hEDS cases, she says. They believe that eventually multiple genes will be identified, and hEDS may be split into different subtypes. This would help to explain why different patients have different symptoms. Crucially, if genetic information sheds light on how the connective tissue is “messed up,” it could lead to effective treatments, says Gensemer.

The Ehlers-Danlos Society is also looking for genes as well as blood markers, working with a team of experts to sequence and analyze the DNA of 1,000 hEDS patients from around the world. And at the UK’s University of Warwick, Ph.D. candidate Sabeeha Malek, another scientist with hEDS, has proposed that EDS might be caused by a fault in the way that collagen binds to cell membranes in connective tissue. If she’s right, she hopes her work will lead to a skin biopsy test that could identify all forms of the disease.

Sabeeha Malek is working to identify biomarkers that could make EDS diagnosis easier.

Progress is being made but on a very small scale. “If you look at any major academic institution, there are multiple labs studying cancer, multiple labs studying heart disease. When you look at a disease that affects one in 500 people, and probably more than that, there should be a lab studying it at every single academic institution,” says Gensemer.

Gensemer hopes that as more discoveries are made and data is accumulated it will “change the way the medical community looks at the disease” – and that it will be taken more seriously.

A year has passed since Poppy’s diagnosis. The initial shock has subsided, and while I’m still grieving the loss of her health, we’ve both learned to accept our new reality and have adjusted to living with EDS.

I’ve assembled a team of supportive doctors and therapists and acquired an arsenal of paraphernalia to fight pain and manage symptoms, including braces and kinesiology tape to hold her joints in place; ice packs, heat pads, tiger balm and arnica gel for sore muscles; and a cupboard full of medications and supplements.

With Poppy often stuck at home, I also got her a giant kitten that she calls Bagel, and he provides the best therapy.

Poppy with Bagel.

Writing this article has taught me a lot more about EDS: It’s been upsetting to report on the terrible experiences some have suffered, but I’ve been awestruck by the dedication of people, many with the condition themselves, who are working to find solutions.

I don’t know what the future holds for Poppy. Some patients’ symptoms improve with age; others experience an increase in pain and a loss of mobility. I’ve learned there’s a limit to what we can control but there’s a lot we can do, to tackle symptoms and make life easier. And I believe that change is coming.

With a better understanding of the condition and diagnostic tools on the horizon, my biggest hope is that there will be a cure one day – and that it will come in time for Poppy.

Source link

#Millions #bendy #body #disease #daughter #isnt #medical #profession #paying #attention #CNN