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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Woman with Rare Autoimmune Disease Undergoes High-Risk Treatment

Shelley Clark-Collins and her partner Mark Doyle have travelled to Ottawa, Ontario so that she can receive an innovative treatment for her rare autoimmune disease (Photo: CBC News)

Shelley Clark-Collins, a 56-year-old woman from Saint John, New Brunswick, Canada, is looking to undergo a high-risk procedure to treat her rare autoimmune disease.

Clark-Collins lives with dermatomyositis, an autoimmune condition in which her body’s own immune system mistakenly attacks her healthy cells, causing inflammatory, painful and degenerative changes to her skin and muscles. According to Johns Hopkins Medicine, symptoms of the disease include rashes and spotting on the skin, swelling, stiff joints, muscle weakness and aches, difficulty swallowing, voice changes, fatigue, fever, and weight loss. Dermatomyositis can also cause other autoimmune and connective disease conditions, like lupus, and increase the risk of developing cancer.

Dermatomyositis is extremely rare, affecting fewer than 10 in 1 million people, according to an estimate from the National Organization for Rare Disorders (NORD). The disease most often occurs in adults ages 40-60, and juvenile dermatomyositis occurs most commonly in children and youth between the ages of 5 and 15.

Because of its rarity, Clark-Collins had a difficult time getting diagnosed. As a hairdresser, she suddenly found that she was so weak, she could no longer hold up a blow dryer or stand for long periods of time. She was falling down frequently, couldn’t get out of the bathtub, or lift her bed sheets. She was later diagnosed with multiple sclerosis (MS) after a neurologist found a lesion in her brain.

“But what he was treating me with [for MS] wasn’t working,” explained Clark-Collins. After seeing numerous specialists, she was diagnosed with “everything but the kitchen sink,” she recalls, including cancer, arthritis, and Grave’s disease. A dermatologist even told her that she should see a psychiatrist for Empty Nest Syndrome as a result of her kids moving out.

Despite these setbacks, Clark-Collins was eventually correctly diagnosed with dermatomyositis through blood work and muscle biopsies. Since then, the disease has affected her health and wellbeing substantially. Prior to developing the disease, she was an avid marathon runner and outdoor enthusiast, enjoying kayaking, rock climbing, and skiing. Now, she says that walking to her car is a feat. She sleeps in a chair because getting in and out of bed is too difficult with her muscle weakness. She has difficulty swallowing and talking, and has suffered irreparable damage to her heart and lungs. She’s had a stroke, blood clots, and a life-threatening sepsis infection.

Dr. Harold Atkins is pioneering a new treatment designed to help patients with dermatomyositis, a rare autoimmune disease.

However, Clark-Collins has found hope in a new procedure being pioneered by Ottawa, Ontario-based Dr. Harold Atkins. The innovative procedure is a combination of intense chemotherapy and a blood stem cell transplant. The chemotherapy will destroy her diseased immune system, and the stem cells from her bone marrow will be removed, purified and re-injected into her body. It’s a risky and aggressive procedure that aims to reset her immune system – but there are no guarantees that it will work. With the COVID-19 pandemic still raging, re-setting her immune system also leaves her extremely vulnerable to contagious diseases, meaning she could easily die should she catch the virus.

Despite the risks, Clark-Collins says she’s “very excited,” and is looking forward to the possibility of reclaiming her life. As a mother of two adult children, she says “it’s been hard on [my kids] to watch me decline like that.”

Plus, she’s running out of options. She has developed a resistance to several of her medications already, she can’t take large doses of steroids for much longer, and her opioid painkiller can cause an addiction. She also goes to the hospital once a week for plasmapheresis, a procedure in which her plasma (the liquid part of the blood) is separated from her blood cells, and is replaced with new plasma. But this treatment isn’t guaranteed to work forever.

With this new treatment, the hope is that her dermatomyositis will go into remission. Clark-Collins says she dreams of being able to regain her independence, start running again, and just to be able to hug her children without excruciating pain.

“Just maybe [I’ll] get a little big of my life back,” she said hopefully.

To learn more about Clark-Collins’ battle with dermatomyositis, read the full story on CBC News.

My #ThisIsSjogrens Awareness Campaign Submission

Did you know that April is Sjogren’s Awareness Month? That’s right, according to the Sjogren’s Foundation, April was declared Sjogren’s Awareness Month in 1988 when New York Congresswoman Louise Slaughter read it into the Congressional Record.

The 2021 theme for this awareness campaign is Coming Together to Conquer Sjogren’s. When you post on social media or other digital platforms about Sjogren’s, use the hashtag #ThisIsSjogrens to highlight your personal experience as part of the campaign. The purpose of the campaign is to raise awareness about the complexities of the disease, and provide a voice to the 3 million+ Americans (and many more worldwide) who live with it every day.

As April is fast approaching, I wanted to share my personal #ThisIsSjogrens submission with the Autoimmune Warrior blog followers. Read my submission, below!



Name: Isabel

Current age: 28 

Age when diagnosed: 20

Please finish with the following sentence: “Since I was diagnosed with Sjögren’s, I have learned…”
Since I was diagnosed with Sjogren’s, I have learned how important self-care is. Although you can’t let the disease rule your life, you must also learn to listen to your body and take the needed time to rest and recharge.

What are your 3 most difficult symptoms?
My three most difficult symptoms are eye dryness, mouth dryness and joint pain, although I also experience fatigue, brain fog and peripheral neuropathy. 

What are ways that you cope with your most difficult symptoms?
For eye dryness, I use artificial tears eye drops several times a day, and I also take prescription eye drops to reduce inflammation in my tear glands. I also had punctal plugs inserted in my tear ducts to increase my tear retention. For mouth dryness, I use artificial saliva and take pilocarpine, a medication that stimulates saliva production, and I drink plenty of water throughout the day. For joint pain, I take a prescription medication that reduces inflammation and pain in my joints. 

What is one of the ways that you’ve been able to effectively cope with symptoms during this past year in the pandemic?
During the past year of the pandemic, I have taken more time to rest which is helping to reduce my fatigue levels. Also, since I now work from home, I’m able to use a humidifier to humidify my home office environment, which helps with my dryness symptoms.

What is the best tip you would share with another Sjögren’s patient?
If I had to give a tip to another Sjogren’s patient, I would say to find a team of medical professionals who are familiar with the disease. Many medical professionals think that Sjogren’s is just dry eyes and dry mouth, and don’t realize that there is a lot more to the condition and the other symptoms it can cause.

How does the Sjögren’s community and the Foundation give you strength?
The Sjogren’s community and Foundation help to connect me with others who have the disease, so I can build a community around me of other patients who understand what I’m going through. 

What do you wish people understood about Sjögren’s and how it affects you?
I wish people understood how much having a chronic illness like Sjogren’s impacts my health and day-to-day wellbeing. I might not be able to do things that I once could due to this disease, but I won’t let that stop me from achieving my personal and professional goals.


To participate in the #ThisIsSjogrens campaign, answer the questions in the Sjogren’s Foundation questionnaire and email your answers to etrocchio@sjogrens.org.

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