Pushing through the pain: The long road to a dermatomyositis diagnosis

Patient stories

A challenging disease to treat

“I know now that what dermatomyositis does is affect the skin and the muscle tissue, and my legs got so weak I could not walk for the pain,” says Kellie Jo.

Discover Kellie Jo's story below

Autoimmune disorders are not straightforward. They can manifest in many ways, there is usually no simple test for them, and symptoms can closely resemble those of other disorders. As a result, the average time for diagnosis of a serious autoimmune disease in the USA is 4.6 years, during which time patients typically see an average of 4.8 doctors, according to the American Autoimmune Related Diseases Association (AARDA). [1]

For Kellie Jo, the journey to her diagnosis began in 2011. “At that time, I was in and out of hospital for over 16 weeks seeing a cardiologist and an endocrinologist. Diagnosis for me has been an awful struggle, as it is for so many others,” she explains.

Facing her struggle

 As hard as things were, life really turned upside down for Kellie Jo in 2015. In just a short space of time, she first lost a close childhood friend; then her sister, to addiction; and then her brother, to liver cancer. “To say I was devastated is a huge understatement,” she remembers. “It felt like huge parts of me had been removed. Just gone. I knew I had to somehow stay positive for my two boys, but I also started to feel like my body couldn’t take another thing.”

Kellie Jo had no choice but to focus her attention on her health when she developed a rash on her chest and back. “My primary care doctor assumed it was because of all the stress,” recalls Kellie Jo. She started taking steroids, and they did initially help.

But Kellie Jo was soon in constant pain. “I know now that what dermatomyositis does is affect the skin and the muscle tissue, and my legs got so weak I could not walk for the pain,” says Kellie Jo. “I had to sell my pickup because I couldn’t shift it into reverse.”

Like many others with the condition, Kellie Jo now believes she spent many years of her life under the care of different specialists without getting an accurate diagnosis to explain the root cause of her recurring symptoms.

Devastating words

Luckily, Kellie Jo is nothing if not persistent and she spent many hours doing her own research. “I finally came across some information leading me to muscular dystrophy. But still there was the question of the rash,” she remembers. By now her skin was fire red, across her face, chest, neck and shoulders, and she was unable to climb steps without help.

Finally, fully six years after her symptoms began to take over her life, Kellie Jo went back to her primary care doctor in 2017 with a one-word note, “dermatomyositis”, which she handed over. She was sent to a dermatologist, who confirmed her worst fears. “He took one look at me and said nearly the most devastating words I have ever heard: ‘You have dermatomyositis.’”

Kellie Jo has dedicated many hours to conducting her own research on dermatomyositis.

A rare and debilitating disease

Dermatomyositis is a rare autoimmune disorder, affecting about 20 – 90 people per million globally.[2] Autoimmune disorders cause the body’s immune system to attack its own cells and tissue, and dermatomyositis is a rare inflammatory disease marked by muscle weakness and a distinctive skin rash. Affecting more females than males, the condition is found in both adults and children, usually occurring in adults in their late 40s to early 60s, whilst in children it most often appears between the ages of five and 15 years.

Finding a cure

Laboratory tests and biopsies confirmed her diagnosis definitively and Kellie Jo was able to begin a treatment. “I was given the usual suspects,” she recalls, “from more steroids to methotrexate – another immunosuppressant drug.” But her body rejected everything and she found herself in hospital several times. “I was declining rapidly,” says Kellie Jo, adding: “I was so weak, I was not able to even sit up.”

At last, Kellie Jo’s doctor proposed Octapharma’s intravenous immunoglobulin (IVIg) therapy. She seems to remember being told she would need to take it for approximately six months to see a real difference. “But we were able to tell the difference a little bit after three months and at month eight, my life came back!” says Kellie Jo, in tears of joy as she relives that time. “I am so very thankful for this medication and for the physician who prescribed it.”

All roses and sweet tea?

Kellie Jo’s treatment with Octapharma’s IVIg continues and her life has returned to a kind of normal. Almost. Looking back, she realises that – without her own tenacity and hard work to find out what was wrong with her – her diagnosis might have taken much longer than it did, but she is grateful she has gotten where she is.

She now runs an addiction recovery centre which she opened after losing her sister and having seen several friends fight their own demons. “I get so much personally from working with our clients and my story shows them, through my journey, that to succeed you really have to feel the fight in you.”

Reflecting on her life now, under treatment and committed to work, Kellie Jo says: “The centre has been a blessing to me. I’m not going to tell you that all my days are roses and sweet tea, but 9 out of 10 of them are…”

Manage Dermatomyositis Information Hub

Learn more about this rare disease in our information hub which includes tools and the most relevant scientific criteria related to dermatomyositis.

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