How a patient with dermatomyositis adjusted to a life without the sun

For Cindy Singleton, an IT product manager at Labcorp, being diagnosed with a rare autoimmune disease forever changed the way she lives. 

"The most difficult thing is not being able to go out in the sun," she said. "I was a very outdoorsy person before; I used to show horses. Now I stay inside, especially between 10 a.m. and 4 p.m." 

Singleton first started noticing symptoms about six years ago. She developed Raynaud's syndrome, which caused her hands to turn blue and lose circulation. Soon after, an itchy rash appeared all over her body. For months, her doctor thought it was just dermatitis. But when Singleton visited her dermatologist for her annual check-up, the dermatologist recognized the distinctive rashes as a sign of something more serious. A biopsy confirmed dermatomyositis, and Singleton was prescribed creams to help manage the itching.

"I'd never heard of it before," Singleton said. "It was all new to me." 

Coming to terms with a rare diagnosis

A rare subtype of myositis, dermatomyositis is an autoimmune disease that affects around nine people per million each year. It gets its name from the two areas it impacts the most: the skin and muscles. Symptoms tend to begin with a scaly rash, bumps or patches on areas such as the face, hands, knees, chest and back. Redness and swelling may also occur around the nail beds. Over time, the condition can cause progressive weakness and inflammation of the muscles located in the shoulders, upper arms, hips and thighs.  

For many patients with dermatomyositis, getting a proper diagnosis can take months. Because the disease is so rare, and can mimic symptoms of other conditions, rule-out testing to eliminate other diseases is usually performed first. These can include blood tests checking for elevated muscle enzymes, MRI scans to image inflamed muscles or a biopsy of skin or muscle tissue. Healthcare providers may also perform other tests to rule out similar conditions like polymyositis, which only involves muscles, or eczema and psoriasis, which only impact the skin. 

Fortunately for Singleton, her dermatologist was equipped with the knowledge and resources needed for a faster diagnosis, enabling a treatment plan that has helped manage her symptoms. At Labcorp, our goal is to help more providers be aware of the signs of myositis as early as possible, reducing the time spent in rule-out testing so treatment for patients can start sooner.  Our comprehensive MyoMarker® 3 Plus Profile includes both myositis-specific antibodies and myositis-associated antibodies that help determine the presence of an idiopathic inflammatory myopathy in the body.

Finding joy indoors 

Unlike some patients who also experience muscle pain and weakness, Singleton mainly experiences the skin symptoms of dermatomyositis. Because of this, she cannot be directly exposed to sunlight due to the high risk of rashes and blistering., To protect herself when she does have to be outside, she wears hats, gloves, shirts with UPF protection and 100 SPF sunscreen.
In addition to sun sensitivity, Singleton faces the other dermatomyositis-related symptoms of fatigue and weight loss. The immunosuppressant medication she takes also causes side effects like retinal damage, requiring regular eye exams. Despite these challenges, Singleton has found ways to adapt to her diagnosis and continues to lead an active lifestyle. On weekends, she competes with dogs in agility sports—which often take place in large indoor arenas—and she runs every morning before sunrise.

“I’m a little obstinate,” Singleton explained. “When I was first diagnosed and they said I couldn’t go out in the sun or continue to do my dog sports anymore, I thought, ‘I’m going to try to figure out how to get around that.’” 

At times, Singleton acknowledges that having a rare disease can feel isolating; most people are unfamiliar with its symptoms and how they manifest in the body. So when a coworker in the Labcorp IT department received the same diagnosis a few years later, Singleton felt a newfound sense of connection and support. "No one else really understands what dermatomyositis is like," she said, "so it’s nice having someone else to talk to.” 

Advancing care for dermatomyositis

Diagnosing and treating any type of myositis, including dermatomyositis, is often difficult due to the rarity of disease and complexity of symptoms. At Labcorp, we understand these challenges and are committed to innovating science—so patients like Cindy Singleton can experience the best possible outcomes for their health journey. 

Our testing solutions for myositis offer insights that help inform better decisions regarding patient care. Learn more about how Labcorp can support your myositis journey, or explore our full suite of autoimmune testing options. Together, we can improve the journey to diagnosis and treatment.

Legal disclaimer: Cindy Singleton is an employee at Labcorp. No compensation or remuneration of any kind was paid in connection with this story.