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.

Pro Tennis Player Caroline Wozniacki Describes Battle with Rheumatoid Arthritis

Caroline Wozniacki, a professional Danish tennis player, found herself embroiled in a match against her own immune system

From Grand Slam Champion to Bedridden

Caroline Wozniacki, a professional tennis player and Grand Slam champion from Denmark, was at the top of her game in 2018. At 27 years old, she had just finished playing in the Wimbledon, when she found herself feeling extremely ill.

“After Wimbledon, I just feel like I had the flu and wasn’t feeling well. I took some time off from tennis and training in the gym and was just going to relax, but I wasn’t feeling better. So I decided to go back to training and to see what happens,” the now 30-year-old tells Health in an exclusive interview.

She continued to play in tournaments across North America, but only continued to feel worse, and ended up having to withdraw from the Washington Open in Washington, DC as a result. “Day to day, I felt exhausted and was dizzy on the court,” Wozniacki explained. “I also had pain in some joints.”

Unbeknownst to fans, Carolina Wozniacki was battling an undiagnosed autoimmune disease through the later part of her tennis career

At the next tournament—the Rogers Cup in Montreal—Wozniacki was devastated to lose her first-round match. She put the loss behind her, though, and decided to focus her energy on preparing for her next match in Cincinnati. The following morning, however, Wozniacki couldn’t even move her arms or hands.

“I was in so much pain and felt exhausted. I went to see a doctor, because I felt extreme pain in my shoulders, elbows and hands,” she recalls. Her joints were swollen, but since her doctor didn’t see any damage to her ligaments, she chalked her pain up to her demanding travel schedule and athletic regimen. Strangely enough, her vocal cords were also inflamed and her voice became raspy.

Her symptoms continued to worsen, and because doctors couldn’t determine the cause, “They said, ‘Maybe you’re in bad shape. Maybe it’s mental. Maybe you’re pregnant.’ They basically called me crazy,” Wozniacki said. She found it extremely frustrating, especially considering she was in tip-top shape and had just won the Australian Open and a Grand Slam title the year prior. “I was 27 years old and the number two tennis player in the world. I’m in great shape and eat well. I do all the right things,” she lamented.

She insisted on getting multiple blood tests and consulting with various specialists. Finally, it was when she visited the fifth doctor in New York City, that it was discovered through a blood test that she had an autoimmune disease. However, it wasn’t clear which autoimmune condition she had. After a series of additional tests, she was finally diagnosed with rheumatoid arthritis (RA), a chronic inflammatory autoimmune disease affecting one’s joints.

Life After an Autoimmune Diagnosis

After being diagnosed with RA, Wozniacki is determined to live a full life

Wozniacki says that to her knowledge, she has no family history of RA or any other autoimmune disease. From what she understands, the condition could have been triggered due to her exhaustion and her immune system being compromised. Now, she keeps her RA symptoms under control through conventional pharmaceutical treatments, combined with lifestyle tips like consuming a healthy, anti-inflammatory diet and maintaining a consistent exercise routine. She also believes in getting enough quality sleep and avoiding stress in order to prevent arthritis flares.

Though the diagnosis was shocking, Wozniacki was determined to continue playing tennis, and even went on to play in the US Open and the China Open, where she won one of her biggest tournaments. She has since retired from playing tennis professionally, and now works to encourage other women living with chronic inflammatory diseases to share their stories through the Advantage Hers campaign.

Wozniacki describes her struggle with rheumatoid arthritis (RA) as part of the Advantage Hers campaign.

“It takes a long time for a lot of women to get diagnosed, and a lot of doctors don’t take their symptoms seriously at first because autoimmune diseases aren’t on a lot of doctors’ radars. I want women to know that if they have pain in the joints and feel exhausted, they should talk to their doctors about getting tested for RA or other autoimmune diseases,” she says.

Finally, Wozniacki credits her family for helping her to get through the difficulties of living with a chronic invisible illness. That being said, she also believes it’s important to connect with others living with the disease; “I really think it’s important to be able to speak to other people going through the same thing you are. It really makes a difference,” she said.

To learn more about Carolina Wozniacki’s journey with RA, check out the Advantage Hers campaign and share your own story on social media with the hashtag #AdvantageHers.

Autoimmune Disease on the Rise in the United States

An April 2020 study published in Arthritis and Rheumatology suggests that autoimmune disease is on the rise in the United States.

In the study, researchers found that the prevalence of the most common biomarkers of autoimmune disease, called antinuclear antibodies (ANAs), is significantly increasing in the U.S. overall as well as among certain populations. These affected populations include:

  • Men
  • Non-Hispanic whites
  • Adolescents
  • Adults 50 year and older

The researchers examined over 14,000 patients ages 12 and up over the course of three time periods spanning 30 years. In this time frame, they discovered that the overall frequency of ANAs in their test subjects went from 11% affected individuals to almost 16% affected. The worst affected population was the adolescent group, who experienced a nearly three-fold increase in ANA rates over the course of the study period.

While the exact cause of autoimmune disease remains unknown, many scientists believe that a combination of genetic and environmental factors is responsible. However, the researchers in the study state that because people have not changed much genetically over the past 30 years, it is more likely that lifestyle or environmental factors are responsible for the ANA increases.

Christine Parks, PhD, is one of the researchers involved in the study who focuses on the environmental causes of rheumatoid arthritis (RA) and other autoimmune diseases. “These new findings…will help us design studies to better understand why some people develop autoimmune diseases,” she said. She also added that there are over 100 chronic, debilitating autoimmune conditions that could stand to benefit from further research.

Donna Jackson Nakazawa, a Maryland-based science journalist and author of the book The Autoimmune Epidemic, believes that our ever-increasing exposure to chemicals, heavy metals, and viruses, coupled with stress, dietary and other lifestyle factors, is primarily to blame for the increase in autoimmune disease. She also points out that there may be a connection between autoimmune disease and allergies, which are also skyrocketing.

Nakazawa herself suffers from Guillain-Barre Syndrome, a paralyzing autoimmune disease similar to multiple sclerosis (MS). In her latest book, The Last Best Cure, she states that experts predict that the number of Americans who suffer from chronic conditions will rise an astonishing 37% by 2030.

While this may not sound like positive news, one good thing is that with an increase in autoimmune disease, more scientists, medical professionals and pharmaceutical companies will be encouraged to undertake research to find treatments and, ultimately, a cure for autoimmunity. I personally am hopeful that we will see enormous strides in biotechnology in my lifetime.

Are you surprised by the increase in autoimmune disease in the U.S.? Let us know in the comments below!