Rare Autoimmune Disease Claims Australian Woman’s Life

Chris Ferguson (left) pictured with his wife Marcia Ferguson-Roa of Australia, were avid travelers prior to her devastating autoimmune diagnosis. Photo courtesy of the Sydney Morning Herald.

Australian couple Marcia Ferguson-Roa and her husband, Kris Ferguson, enjoyed spending their time sailing in their dream yacht. But in October of 2020, Marcia began to experience a myriad of strange symptoms that wouldn’t go away, and that kept her from her beloved pastime of sailing.

She experienced more fatigue than usual, and had a persistent dry cough. She also had ulcerating marks appear on her forehead and other parts of her body. Doctors weren’t able to determine what was wrong, until Marcia ended up in the hospital a month later.

That’s when she was diagnosed with a rare autoimmune disease called dermatomyositis (DM). Dermatomyositis is rare, affecting just nine in 1 million people worldwide. The specific type of dermatomyositis that Marcia had, however, was even less common; named MDA5 antibody positive dermatomyositis, it is more life-threatening than other forms of DM, since it affects the lungs. Only 5% of those with DM have this particular variation, making it extremely challenging to diagnose.

Myositis is a group of autoimmune disorders that cause muscle inflammation, and dermatomyositis also affects the skin. The Myositis Association Australia states that 1 in 200,000 people have some form of myositis. Unfortunately, some of the symptoms, such as muscle weakness and fatigue, are often overlooked as just the normal signs of aging, Christine Lowe, the Association’s President said.

Unfortunately, though Marcia fought hard against her disease, her condition worsened and doctors were forced to put her in a medically-induced coma. She never woke up, and one week later, she was pronounced dead. Her husband Kris was devastated to learn of her passing after almost 40 years of marriage.

“I told her I loved her and that we would talk tomorrow,” he said. “There was no tomorrow.”

Dr. Girgis, the head of rheumatology at St. Vincent’s hospital where Marcia was hospitalized, said more research dedicated to autoimmune diseases is necessary to find the root cause of why the body attacks its own tissues.

Interestingly enough, another man named Abu Jalil was treated for the same rare variation of dermatomyositis that Marcia had at the same hospital in Australia. When the local paper published a story about Abu’s plight, the community raised over $180,000 for his expensive treatment and medications, which aren’t covered by the country’s National Benefits Scheme. Thankfully, Abu’s condition is improving.

To learn more about Marcia’s battle with dermatomyositis, read the full article in the Sydney Morning Herald.

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March is Autoimmune Disease Awareness Month

According to the American Autoimmune & Related Diseases Association (AARDA), March is officially Autoimmune Disease Awareness Month (ADAM)! During this month, the organization works to raise awareness about autoimmune diseases among the general public. With increased awareness about autoimmune diseases, the AARDA says that they will be able to secure more funding for medical research, new treatment options, and improved patient diagnostics.

According to the AARDA, there are over 100 known autoimmune diseases, which are responsible for causing widespread chronic illness and pain. While many individuals have heard of at least one autoimmune disease, like rheumatoid arthritis, lupus, multiple sclerosis, type 1 diabetes, or Crohn’s disease, few members of the general public know that these conditions are autoimmune in nature, and all stem from the commonality of an overactive immune system.

There is also widespread misinformation about the term ‘autoimmune’. I once read on the Reddit forum r/autoimmune about a woman who, during a doctor’s appointment, told a nurse that she had an autoimmune disease. The nurse thought that this meant that the patient had HIV/AIDS, which is not an autoimmune disease, but rather an immunodeficiency caused by a virus. These misconceptions about autoimmune disease are another reason why it’s important to raise awareness and educate the public – and even healthcare professionals – about this cause.

While the exact number of autoimmune disease patients is unknown, it’s estimated that autoimmune conditions impact over 24 million Americans. An additional 8 million Americans have auto-antibodies, blood molecules that may predispose them to developing an autoimmune disease in the future. This isn’t counting the many individuals who go undiagnosed as a result of their symptoms being dismissed, a misdiagnosis, or due to their healthcare provider lacking knowledge about autoimmune disease.

Autoimmune diseases are also a leading cause of death and disability. Dr. Anthony Fauci, a leading allergy and disease expert, estimated back in 2001 that autoimmune disease treatment costs in the US exceeded $100 billion annually. While this may seem like a staggering figure, it’s possible that the true cost is much higher, since, as noted above, many individuals go undiagnosed or are misdiagnosed, and new autoimmune diseases are being discovered with each passing year. Furthermore, a more recent 2020 study showed that the incidence of autoimmune disease is on the rise in the US – so these cost figures (which are now 20 years old), are most likely continuing to increase.

The fact that autoimmune diseases pose an extreme burden on our healthcare system is just another reason that it’s important for the general public to be educated about these conditions, and why more resources need to be dedicated towards research and finding a cure.

So what can you do to help? If you or someone you love has an autoimmune disease, consider raising awareness (with the patient’s permission, of course), by posting about it on social media with the hashtag #ADAM for Autoimmune Disease Awareness Month. By sharing your story or the stories of others, you can raise awareness and be a voice for the millions of people suffering from autoimmune diseases worldwide.

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Can I get the COVID-19 vaccine if I have an autoimmune disease?

Is the COVID-19 vaccine right for autoimmune disease patients?
The COVID-19 vaccine is expected to roll out to members of the public in early 2021. Image courtesy of the BBC.

As the COVID-19 vaccine rolls out across the nation, many members of the public are wondering if getting vaccinated against the coronavirus is right for them. More specifically, those with autoimmune disorders, a disease class in which one’s own immune system mistakenly attacks the body’s own tissues, wonder if they are candidates for the COVID-19 vaccine.

Dr. Shafinaz Akhter, Physician at Chester County Hospital in Philadelphia, PA, states, “Our advice has always been that there is no harm to getting it. It is very unlikely that you’re going to have an adverse reaction or worsening symptoms from your underlying disease based upon receiving the vaccination.” For this reason, she says that at her hospital, they are recommending that anyone with an autoimmune disease, such as lupus, rheumatoid arthritis, or Crohn’s, get vaccinated.

Furthermore, Dr. Akhter adds that many autoimmune disease patients take immunosuppressants or other immune-modulating prescription drugs, which are medications designed to decrease immune system overactivity and the damaging inflammation that comes along with it. These medications may reduce the vaccine’s ability to stimulate your body to mount an immune response against the virus. For this reason, it’s important to speak with your healthcare provider regarding the timing of when you take your medications and when you receive the COVID-19 vaccine. Examples of such medications include methotrexate or rituximab.

Dr. Anthony Fauci, the country’s top infectious disease expert, weighed in on the subject, stating, “It is clear that if you are on immunosuppressant agents, history tells us that you are not going to have as robust a response as if you had an intact immune system that was not being compromised. But some degree of immunity is better than no degree of immunity. So, for me, it would be recommended that these people do get vaccinated.”

The CDC, for its part, has stated that those with autoimmune conditions may receive the COVID-19 vaccine, while also acknowledging that no data currently exists with regards to the safety of these vaccines for autoimmune disease patients. 

The CDC adds that it is expected that the risk of the COVID vaccine for autoimmune disease patients to be minimal, based on the vaccine’s mechanism of action. This is because none of the COVID vaccines use a live virus, nor do they include an adjuvant, which is a substance that enhances the body’s immune response to an antigen. Finally, none of the available vaccines become incorporated in your own genetic material (i.e. DNA), since they are mRNA vaccines.

As with any new medical treatment, it’s encouraged to speak with your healthcare provider before making a decision on whether or not to get the vaccine, so that they can advise you based on your specific situation. To learn more about the COVID-19 vaccines, visit the CDC website.

Are you planning to get the COVID-19 vaccine? Let us know in the comments below!