A Life Rewritten: Living Fully with Dermatomyositis | Patient Stories | PatientWing

When Megan Kirby Lance first noticed a rash in 2016, she didn’t immediately worry. But the telltale butterfly shape across her face, followed by patches on her elbows, knees, chest, and back, signaled that something deeper was happening. “I’m a hairstylist and makeup artist, so when my hands became involved, I knew I couldn’t ignore it,” Megan recalled. “That’s what pushed me to start digging.”

Understanding the Impact on Mental Health with a Rare Disease Diagnosis | PatientWing

Rare disease patients may struggle with the physical symptoms of their condition, but also the psychological burden of living with a disease that is poorly understood, often misdiagnosed, and has limited (or non-existent) treatment options.  Managing a rare disease—attending appointments, treatment regimens, and time spent resting or recovering—takes rare disease patients away from doing and spending time with people they love.
Load More