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“It was pretty much hell for a year”: A Labcorp employee’s journey with dermatomyositis

28 August 2024

When a rash first appeared on Donna Carter's forehead in the summer of 2021, she thought little of it. Assuming it was just a reaction to a new skin cream, Carter consulted a telehealth doctor who prescribed some topical treatments. But as weeks passed, the rash persisted.

"It kept itching incessantly, so after about a month, I went to see a dermatologist," Carter recalls.

At first, even the dermatologist believed it was just a minor skin irritation. However, during Carter’s appointment, the doctor made an alarming discovery—Carter had melanoma as well. While undergoing treatment to remove the melanoma over the next couple months, the rash kept worsening instead of improving. "My face kept getting redder and redder, and the rash went from my forehead to spreading all over my face," Carter says.  

By late 2021, Carter's condition had deteriorated dramatically. The rash had now spread down her arms and hips. Even more concerning, her muscle strength and tone were rapidly declining and she began experiencing near-constant exhaustion.

"One day, I went to brush my hair and I couldn't lift my arms. Basically, all my muscles left my upper arms. Then it started impacting my thighs, so I would stumble and fall while walking through my house," she describes.  

After months of biopsies and rule-out testing, Carter, who is an IT director at Labcorp, finally received a diagnosis in March of 2022. She had dermatomyositis, a subtype of myositis: a rare autoimmune disease known to cause muscle weakness and skin rash. Some types of myositis, like Carter’s, are also associated with cancer.

“I used Labcorp Patient portal to become my own advocate” 

Dermatomyositis is a rare health condition, affecting only around nine people per million each year. The disease causes inflammation and damage to muscles and skin, leading to distinctive rashes and progressive muscle weakness and pain.

Like many myositis patients, Carter’s journey to diagnosis was long and difficult. While undergoing more than six months of biopsies and rule-out tests, Carter remembers healthcare providers trying every solution they could to help manage her symptoms—with varying amounts of success. The constant testing amid her own pain, fatigue and necessary lifestyle adjustments to accommodate her new normal took its toll. “It was pretty much hell for a year,” Carter admits.

Along the way, however, Carter learned how to be her own health advocate during medical appointments. As luck would have it, Carter’s work at Labcorp involved product development on Enhanced Reporting, a feature that launched in 2021 and became a key part of navigating her own healthcare with doctors. "I was able to have (my lab work) sent to Labcorp and use the new features we introduced for previous history to help show whether I was getting better with the various treatments," she explained. “I am also registered with our Labcorp Patient portal and used it so much to pull down my results and show my doctor what I was experiencing. It was a godsend.”

Eventually, Carter’s doctors started her on high-dose steroids to try to slow the progression of the disease. The steroids helped the itching but came with a side effect of rapid weight gain, causing strain on her already weaker muscles and joints.

"Between the moon face from steroids and the drooping muscles in my cheeks and chin, I was unrecognizable,” Carter added.

Her treatment plan evolved to include long-term oral chemotherapy medication and intravenous immunoglobulin infusions every two weeks. The treatments have helped improve her daily functioning, though she still experiences flares of weakness and pain. 
 

A patient’s tips for living with dermatomyositis

  • Be your own advocate and don’t be afraid to ask questions. Use resources like Labcorp Patient® portal to help inform conversations with your healthcare team. 
  • Find tools to help educate yourself on the disease. Carter frequently refers to the Myositis Association’s materials and trainings for information on the disease and is an active member of a Facebook group for dermatomyositis patients, where she gets recommendations on everything from shampoo to new recipes
  • Keep a journal of things that bother you or help you. “I learned very quickly that I had to change my diet, as sugars and dairy are my enemy. I have had to give up some of my favorite foods but have found good substitutes.”
  •  Keep out of the sun and take precautions indoors. “Wear ample sunscreen, even indoors. The LED lighting in malls, for example, has been known to trigger skin flares and reactions. Also, splurge on getting ceramic tinting for your car and house windows. It has been a lifesaver!”
     

Myositis: More than skin deep

Having a rare disease like myositis has affected every facet of Carter's life. For example, being in the sun for any amount of time without long-sleeved clothing and sunscreen causes her skin to blister and burn. This has presented unique challenges for Carter, whose favorite hobbies include outdoor activities, like gardening and running. Her diet is restricted to foods that won’t trigger inflammation and she continues to do routine lab testing to check for cancer and to make sure her organs do not go into distress from the disease or medications.

“I have to do lab testing for my liver and kidney functions every eight weeks,” Carter says. “Diagnosis is the first part of healing, but managing this chronic condition is also very important and impactful to my overall health.” 

Nevertheless, Carter prides herself on her resiliency and focuses on maintaining a positive attitude. Her family and coworkers have provided a strong support system, including one Labcorp coworker who also lives with myositis. "She and I bonded over sharing this journey together," Carter says. By sharing her own story, Carter wants others to know that myositis is more than skin deep; the unseen parts of the disease are by far its most challenging aspects. “People look at you and see this rash, but inside, what’s happening is so much worse," she says. “The sheer exhaustion you have is unsurmountable.”

While living with dermatomyositis poses many challenges, Carter has hope for the future and confidence that better treatments are on the horizon. "I work at a wonderful company where I know there are scientific advances every day,” Carter says. “So the hope I get is knowing that (healthcare providers) will learn more and more about this type of disease. I don’t expect that the treatment I’m on today will be the treatment I’m on in two years. I think it will get better.”

Advancing care for myositis

The path to receiving a myositis diagnosis is often difficult due to the rarity of the disease and the complexity of its symptoms, which can mimic other conditions. At Labcorp, we understand these challenges and are committed to innovating science—so patients like Donna Carter can experience the best possible health outcomes.

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: Donna Carter is an employee at Labcorp. No compensation or remuneration of any kind was paid in connection with this story.