Shawna’s Story Finding Strength in the FightHi, my name is Shawna. I live in Georgia, and I have cutaneous and systemic mastocytosis. My diagnosis journey took over 12 years, marked by years of ER trips and hospital stays for what I thought was food poisoning but was actually systemic mastocytosis. I was originally diagnosed with cutaneous mastocytosis and was told it would likely not progress. I was advised to do yearly blood tests to monitor my tryptase levels. Fast forward 10 years: I fell in my house, broke my hip and femur, and had to undergo emergency surgery. At that point, I added another diagnosis to my list—osteopenia—and I wasn’t even 50 yet. Finally, after years of seeing doctors, a lab result was flagged in D.C. A military doctor specializing in systemic mastocytosis research with the NIH suspected the cause. My husband and I drove to Walter Reed, where a bone marrow biopsy confirmed systemic mastocytosis. My Worst Symptoms My most challenging symptoms include: Anaphylaxis Sensitivity to sun, heat, and smells (yes, smells can trigger anaphylaxis!) Full-body rashes, hives, diarrhea, GI pain, migraines, brain fog, and extreme exhaustion Chronic bone pain, which I cannot treat with pain medication due to anaphylaxis My home is a scent-free zone due to reactions. Coping with these symptoms is a daily challenge. How I Manage My Mast Cell Disease I manage my condition by avoiding triggers as best as I can, though it’s not always possible. Triggers include foods I’ve eaten my whole life, smells, heat, weather changes, emotions, and stress. Often, it’s the combination of these triggers that leads to a reaction. I take a variety of medications several times a day, have labs drawn monthly, and pace my workload, teleworking as much as I’m allowed. I’ve learned to adjust my lifestyle, balancing periods of activity with rest to avoid being bedridden for days after overexerting myself. Lessons Mast Cell Disease Has Taught Me Mast cell disease has taught me to: Listen to my body. Advocate for myself—whether at work, the doctor’s office, in my family life, or in the ER. Pace myself and adjust my expectations. Value my health and take control of my journey, even when others don’t understand. Your health is important, and you are worth the effort it takes to get a proper diagnosis and care. If others don’t believe you, that’s their problem—not yours. What I Do for Others I volunteer as a group leader for TMS’s Work Life Support Group and online support groups. I also moderate a Facebook group for people with similar experiences. Additionally, I collaborate with companies working on mast cell diseases and participate in educational initiatives with WebMD and Medscape to improve continuing education for physicians and nurses. The more information we share, the faster others will be diagnosed. What I Hope for Others I hope you find a safe space to discuss your concerns and receive support. We are a rare disease community, and physicians are still learning how to piece together our puzzles. By talking more and educating others, I hope we can reduce the average diagnosis time of 7–10 years.
