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.
