Spotlight On: Myasthenia Gravis

By Ericka Greene, MD, director of the Neuromuscular Clinic at Houston Methodist Hospital, as told to Kara Mayer Robinson

Many things can impact life with myasthenia gravis (MG). Everyone’s experience is unique, but here are some things that may affect yours.

 

 

Health Disparities

As with many medical conditions, health care disparities, also called social determinants of health, can affect your quality of care. Things like socioeconomic status, gender, immigration status, ethnic background, and even ZIP code may play a role in the care you receive.

For example, insurance issues and financial struggles may make it harder to get a diagnosis, treatment, or emergency care. Cultural differences and language barriers can create a communication gap between you and your doctor. If you’re a woman, your doctor may attribute your MG symptoms to stress, anxiety, and depression.

Health disparities may delay a proper diagnosis and much-needed treatment. Some people with MG go months or even years without a confirmed diagnosis because of these issues. This increases your risk of complications, which can result in long-term disability and even risk of death.

Even with a proper diagnosis, it may be a challenge to find care in your community with a provider who’s knowledgeable, affordable, accessible, and willing to address the issues that cause disparity.

To improve your access to care, it’s important to build up your health literacy. This means learning about MG, your health, and the health care system. Talk to your doctor about MG and how to get the best care. You can get more information from centers that specialize in MG, like the Myasthenia Gravis Foundation of America, at myasthenia.org.

You can also find resources in your community. You may find charity clinics that offer free or discounted care. Many hospitals and care centers have translation services for people whose primary language isn’t English. Patient assistance programs sponsored by pharmacy companies may provide medication if you’re financially eligible.

Quality of Life

In recent years, experts have started to focus more on how MG affects quality of life. When researchers study new therapies, they also look at how they affect your daily activities.

MG symptoms often affect your quality of life. For example, fatigue may make grooming more challenging, which may limit your ability to get ready for work, complete errands, and travel to family outings. Doctor visits and treatments may make it harder to plan for vacations or important events in your life. It may be challenging to keep up with cleaning, meal preparation, social outings, children’s events, and earning a living.

This can be even harder if your family and friends don’t understand the impact of MG, especially if it varies from day to day or moment to moment. You may seem healthy to your loved ones, but the reality is often different.

Quality-of-life issues may lead to depression, isolation, and anxiety, which may worsen your fatigue and daily function. It may be difficult for you and your doctor to separate which symptoms are primarily due to MG and what’s contributing to or worsened by MG.

If you’re struggling with daily activities, it’s important to talk to your doctor and family. You can also find support at the Myasthenia Gravis Foundation of America and in local MG support groups, which provide a safe community to share your experiences, exchange ideas, and learn about new treatments and resources. A professional counselor can also help you and your family with your physical and mental health.

Stigma of Myasthenia Gravis

You may experience a stigma attached to MG in the health care system and in your personal life.

MG is a relatively uncommon condition, compared to other conditions, so people with MG often find themselves in a variety of clinical settings, like clinics, urgent care, emergency rooms, or hospitals, with health care providers who are unfamiliar with the disease and how to evaluate or manage it.

Even within the field of neurology, some neurologists don’t feel comfortable treating people who need more than one or two therapies. In this type of environment, your concerns or symptoms may be dismissed by doctors. This stigma makes it harder to take part in your care and advocate for yourself. At worst, it can lead to more health complications.

In your personal life, the stigma may be related to how you’re perceived by your family and community and how you view yourself. If your family or friends aren’t informed about MG disease and how it impacts you, it can lead to a lack of support.

You may feel guilty for not being able to perform or engage the way you or others expect, especially if you look like you’re healthy and others don’t know you have MG.

A prime example is if you need handicap parking because of limited walking. If you don’t have a walker, cane, or wheelchair, you may get disapproving looks or negative remarks from strangers who think your status is fraudulent. Similarly, if you need to apply for disability due to MG limitations, it may take resources and time to get disability status from a system that silently communicates that you should be able to work, even if your doctor provides records to support it.

These tips may help you manage stigma:

  • Get emotional support.
  • Talk to other patients with MG.
  • Learn about your rights as a patient in settings like work, school, and society.

Gender Issues

MG affects women in different ways.

The condition is sensitive to hormonal changes, which may lead to changes or worsening with menses, pregnancy, and menopause.

If you’re pregnant, your MG may get worse during the early part of pregnancy, during delivery, and after delivery. You may not be able to use certain treatments that stabilize MG while you’re pregnant.

Symptoms like facial weakness, lid drooping, and voice changes may affect your self-esteem. Side effects of treatment, like weight gain and thin, easily-bruised skin, may also impact how you feel about yourself.

Women often face gender-related issues in the health care system that affect access to care and outcomes. It’s important to establish care with a neurologist who’s familiar with MG and its management. Your doctor should talk with you about your needs, expectations, desires, and how to address the issues specific to being a woman with MG.

Access to New Treatments

The landscape for treating MG is promising. In the past few years, several new and effective treatments have been approved for MG. These targeted therapies have fewer side effects and may lead to better daily function and quality of life.

The challenge that remains is the ability to access these treatments. These new treatments have high costs that may be an issue for many people, including people who are uninsured or marginalized, as well as people who have good access to care.

The hope is that as newer therapies are approved and options for care expand, resources for  assistance will expand and the market will adjust so it’s available to all eligible patients.

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The world hitting ‘peak baby’ and other stories you might have missed this year

From Russia’s invasion of Ukraine, to the death of Queen Elizabeth II, 2022 was full of big stories. 

After two years dominated by COVID-19, these headlines took attention away from a pandemic that stubbornly rages on.

We’ve compiled a list of your 15 most-read for the year.

Anthony Albanese led Labor back from the political wilderness in 2022. (AP: Rick Rycroft)

After almost a decade in the political wilderness, Australian voters returned Labor to office in 2022, led by Anthony Albanese.

While self-described “bulldozer” Scott Morrison had made a last-ditch pitch to voters to keep him in power, his unpopularity would play a key role in a raft of Coalition seat losses.

Former treasurer Josh Frydenberg was just one of those high-profile candidates sent packing, amidst a so-called “teal” (independent) wave.

A disgruntled-looking Novak Djokovic spreads his arms wide as he looks down at the court  after a point during a match.
The federal government spectacularly deported Novak Djokovic ahead of the Australian Open. (AP: Kamran Jebreili)

Confusion reigned in January when nine-time Australian Open champion Novak Djokovic was granted an exemption to travel to Australia without being vaccinated against COVID-19.

With Melburnians having spent more than 260 days in lockdown, there was also a fair share of public anger at the seeming double standard.

The federal government subsequently stepped in, announcing that it would deport the 34-year-old, with Djokovic spending the night in immigration detention as his lawyers appealed.

The fiasco made headlines around the world, with the world number one eventually deported on the eve of the tournament. 

A man in a suit stands in front of a red backdrop.
At least 6,702 civilians have died since Russia invaded Ukraine. (AP: Sergei Bobylev/Sputnik/Kremlin Pool Photo)

News first broke in February that Russian President Vladimir Putin had authorised a military operation in the Eastern European country.

As of December, war still rages in Ukraine, with scores of civilians dead and millions displaced.

A recent UN report, released on December 4, estimated that 6,702 civilians had died, with Russian forces killing at least 441 in the first weeks of the invasion.

All is not going to plan for Putin, however, with discussion recently turning to the possibility of Ukraine recapturing all of its southern territory — even liberating Crimea.

A huge grey cloud rises from a submarine volcano, as a forked bolt of lightnight hits the left side of the rising ash plume.
The Hunga Tonga-Hunga Ha’apai erupted off Tonga in January, causing widespead chaos.(Reuters: Tonga Geological Services)

The Hunga Tonga-Hunga Ha’apai volcanic eruption came to a powerful climax in the middle of January, causing tsunamis locally as well as in New Zealand, Japan, the US, Russia and Peru, to name a few.

Australia’s east coast and islands were also issued tsunami alerts, while at least six people were reported dead.

NASA later declared that the Tongan tsunami was hundreds of times more powerful than the atomic bomb the US dropped on Hiroshima during World War II.

Constables Rachel McCrow and Matthew Arnold smiles with the police badge behind them.
Constables Rachel McCrow and Matthew Arnold were killed in a deadly siege in rural Queensland in December.(ABC News: Lewi Hirvela/Supplied: Queensland Police Service)

Two police officers and a member of the public lost their lives in horrific circumstances in December, after police were called out to a property in Wieambilla, west of Brisbane, searching for a missing Dubbo man.

Queensland Police Union president Ian Leavers said Constable Rachel McCrow (29), Constable Matthew Arnold (26) and neighbour Alan Dare (58) were killed in a “ruthless, calculated and targeted execution”.

“Just such a tragedy, this should never happen,” Leavers said.

“They’re both under 30, they’ve hardly lived life and their lives have been cut short.”

Rapid antigen test kits for detecting COVID-19
Should you be asking for an antibody test to see if you’ve been infected with COVID-19?(ABC News: Tara Cassidy)

This article starts with a scene from the start of the year that could well describe the situation today.

Omicron cases are much higher than official numbers, and it’s increasingly difficult to access a PCR test to find out whether or not the scratch in your throat is COVID or hayfever.

So how do you know if you’ve actually been infected with COVID-19?

Antibody tests can answer that question (depending on the time frame in which the test is done, and whether you mounted a detectable response to infection), but experts like AMA vice-president Chris Moy say there should be a clear clinical reason for conducting them.

A good example of when an antibody test might be appropriate is if someone is experiencing symptoms consistent with long-COVID.

hundreds of little human models in a big crowd
The world is now inhabited by over 8 billion people, but there may never be more children alive than there are today. 

By the time you read this paragraph, the world’s population grew by around 20 people, writes Casey Briggs.

That’s about the best way to wrap your head around what it means for the world to be inhabited by eight billion people.

But while population growth has been rapid — increasing by seven billion in the last two centuries — we are now at “peak baby”, meaning there will never again be more children alive than there are today.

That’s in part because fertility rates are plummeting across the globe, although trends differ geographically: just eight countries are projected to be responsible for more than half the world’s population increase by 2050.

a young girl smiling and holding an umbrella
Charlise Mutten, 9, was on holiday in the Blue Mountains before she was allegedly murdered by her mother’s fiancé.(Supplied)

Five days after nine-year-old Charlise Mutten was last seen in the Blue Mountains, police charged 31-year-old Justin Stein with her murder.

Police alleged Stein, who was engaged to Charlise’s mother, acted alone, after Charlise’s remains were found in a barrel in the bush near the Colo River.

A number of inconsistencies in Stein’s story raised suspicions, including his purchase of 20 kilogram sandbags from a hardware store, and fuel for his boat.

Charlise lived with her grandmother in Coolangatta in Queensland, but had been holidaying in NSW with her mother and Mr Stein.

Stan Grant speaks about not being seen as a human being image
Stan Grant wasn’t afraid to talk about the big issues facing First Nations people in the wake of Queen Elizabeth II’s death. (Four Corners )

In the wake of Queen Elizabeth II’s death, Stan Grant’s analysis focused on the stuff “we aren’t supposed to talk about”: colonisation, empire, violence, Aboriginal sovereignty and the republic.

He wrote of his anger at the ongoing suffering and injustice of First Nations people — in particular those “languishing in cells. Those who take their own lives. Those who are caught in endless cycles of despair”.

He also reflected on the inevitable online abuse he and his family would receive in the wake of his column, before resolving not to be scared into silence.

“Why? Because a voice is all we have. Because too often that voice is silenced.”

A framed photograph of Shane Warne on the cricket pitch says 'THANK YOU SHANE'.
The news that 52-year-old Shane Warne had died of a heart attack prompted a global outpouring of grief. (AAP: Joel Carrett)

For many, “Warnie” was larger than life, a once-in-a-generation cricketer famous for reinvigorating the art of leg spin, as well as his embodiment of the “Aussie larrikin” trope.

So it was with great shock that many responded to the news that he had died of a heart attack in Thailand, aged just 52, leaving behind the three children he had with his former wife Simone Callahan.

It led to an outpouring of grief around the world, with Premier Daniel Andrews offering a state funeral and the MCG rebranding the Great Southern Stand the “Shane Warne Stand” in the Victorian’s honour.

The Foo Fighters lead singer and guitarist, Dave Grohl, with drummer, Taylor Hawkins.
Taylor Hawkins (left) had been the Foo Fighters’ drummer for the last 25 years.(AP: Kevin Winter)

The announcement that Taylor Hawkins had died at age 50 came just hours before the Foo Fighters were due to take the stage at a Colombian music festival in Bogota.

Hawkins had been the band’s drummer for the last 25 years, taking over from original drummer William Goldsmith in 1997.

Apart from founder Dave Grohl (formerly of Nirvana), he was arguably the most recognisable face of the band, and is survived by his wife Alison and their three children.

Water rises over a riverfront restaurant precinct, making the restaurants look like part of the river
South-east Queenslanders were hit with “unrelenting walls of water” in February. (Supplied: Shae Laura)

In February, south-east Queensland was battered by what Premier Anastacia Palaszcuk described as “unrelenting walls of water”.

Multiple lives were lost as thousands of homes flooded, tens of thousands were evacuated, schools were closed and businesses were left without power.

It was just the start of a series of floods that would occur in Queensland and New South Wales over the coming months, devastating communities in both states.

A woman with long brown hair and a green blouse smiles while looking at the camera.
Julia Hunt wants to destigmatise public housing in Australia.(Supplied: Julia Hunt)

Victorian Liberal MP Wendy Lovell offended many in March when she told parliament that social housing should not be placed in affluent suburbs.

This article explores the stigma of growing up in social housing, and its increasing association — from the 1970s onwards — with “crime and criminality, disorder, anti-social behaviour [and] welfare dependency”.

Author Bridget Judd explores the efforts of youth worker Julia Rudd and others to combat “postcode discrimination”, writing: “For those living in public housing, it’s not an abstract policy discussion, it’s home.”

Rain on the lense
BOM didn’t have good news for us about the long-term weather outlook. (Matt Grbin)

Natural disasters (and the ongoing effects of climate change) were in the headlines again in October, with the Bureau of Meteorology (BOM) releasing a long-range forecast — until April 2023 — for Australia’s “upcoming severe weather season”.

The state-by-state forecast warned of an increased risk of widespread flooding for eastern and northern Australia, as well as an increased risk of an above-average number of tropical cyclones and tropical lows.

None of it read like great news, as many of us are experiencing currently.

The Queen shaking hands with Liz Truss in a living room
Liz Truss was sworn in by Queen Elizabeth II just two days before the monarch died. (Reuters: Jane Barlow)

Liz Truss’ prime ministership might have lasted just 44 days, but it will be remembered for the most dramatic series of events.

Truss was famously sworn in by Queen Elizabeth II on September 6, just two days before the monarch died.

She then implemented a raft of economic measures that saw the world’s sixth-biggest economy abruptly crash, saved only by extraordinary interventions from the Bank of England.

After a series of humiliations and U-turns, the British tabloid the Daily Star then set up a live feed of an unrefrigerated iceberg lettuce, asking who would last longer, the lettuce or Truss.

The lettuce won. 

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