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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.”
What followed was a challenging but unusually swift diagnostic journey. A perceptive physician assistant at a dermatology clinic suggested testing for lupus. While lupus was ruled out, her textbook-appearing rashes pointed toward something just as serious: dermatomyositis, a rare autoimmune disease that causes skin rashes, muscle weakness, and other systemic symptoms.
A Rare Diagnosis, and a Life Changed
Diagnosed in early 2017, Megan was only in her twenties and had recently aged out of her parents’ insurance. “I was young, healthy, working 50 hours a week,” she said. “I felt invincible.”
The diagnosis changed everything—emotionally, physically, and professionally. For someone who had built a thriving career in beauty and special event styling, dermatomyositis felt like an invisible thief. “It was shocking. You imagine your life going a certain way, and then—overnight—it’s not yours anymore,” she said. “I was grieving the life I thought I’d have.”
Though Megan continued to work, she scaled back significantly, cutting out weddings and large events that left her depleted and flaring. Today, she works around 25 hours a week and listens closely to her body’s cues.
Treatment and Error
Like many with autoimmune diseases, Megan’s path to symptom management wasn’t straightforward. Her first treatments included high-dose prednisone and methotrexate, both of which failed to bring lasting relief. Eventually, she began IVIG infusions every six weeks and, more recently, started taking Rinvoq—a medication not yet FDA-approved for dermatomyositis.
“I read about a clinical study where 61 out of 61 patients saw significant improvement. I brought it to my rheumatologist, and we decided to try,” she said. “It’s been a game-changer.”
This proactive, research-driven approach has defined Megan’s journey.
Finding Healing in the Everyday
Dermatomyositis has demanded lifestyle changes, but it’s also offered perspective. “I cherish my good days now,” Megan said. “I used to feel burdened by family events or chores. Now I love hanging out with my family. I don’t take anything for granted.”
Sleep, movement, and mindfulness are central to her self-care. She avoids alcohol, sticks to natural fabrics, uses fragrance-free products and mineral sunscreen daily, and even swears by Balmex diaper cream for her hands during flares. A former night owl and social drinker, she now calls sleep her “number one tool.”
“I treat myself like my own baby,” she joked. “Gentle, nourishing routines make all the difference.”
Community and Advocacy
Navigating a rare disease often means confronting medical gaslighting, a lack of research, and isolation. Megan has experienced all three and built strength through sharing her story.
Her Instagram posts have led to connections with women worldwide, many of whom were newly diagnosed or had gone years without answers. “That first post led to hundreds of messages. I still get them,” she said. “You don’t have to join a formal support group. Just find one person who gets it.”
Through the Myositis Support and Understanding (MSU) community and candid conversations with clients—many of whom are in healthcare—Megan has built a circle of insight, compassion, and encouragement. “Doctors, Physician Assistants, and even an oncologist client helped guide me through treatment decisions,” she said. “People have shown up for me in ways I never expected.”
The Emotional Side of a Rare Disease
The physical toll of dermatomyositis is real, but so is the emotional weight. “It’s like mourning a loved one,” she said. “You ping-pong between grief and acceptance.”
Talk therapy has helped Megan work through the “what-ifs” and cultivate resilience. “You have to learn to self-advocate. That doesn’t mean yelling—being firm, informed, and unafraid to speak up.”
Looking Ahead with Compassion and Clarity
Megan’s perspective has shifted dramatically. “I’ve cultivated a maturity I didn’t have before,” she said. “I don’t have time for excuses. I don’t miss appointments, and I give myself compassion.”
She hopes to see increased funding and access to rare disease research, particularly for clinical studies. “A lot of people don’t even know how to get into a study,” she said. “We need better communication between providers and more patient education.”
Advice
Advice from Megan for those with dermatomyositis:
Megan also recommends focusing on stress management, and clinging to small joys, like walks, pets, and quiet mornings. “Isolating yourself is the worst thing you can do. But it’s what you’ll want to do. Fight the urge,” she said. “Hold onto hope and make every day a good day, you’ll be okay.”
