Mastocytosis and Me

The story of Tracy

How would your life change if you developed an allergy to water? What if you broke out in hives each time you exercised, showered, or induced any form of stress on your body? Welcome to the zebra tribe.

Some rare diseases we humans are born with. Others, like mine, present themselves over a lifetime. Systemic mastocytosis is a hematological disease caused by a mutation in the gene coding of something called our KIT receptor (D816V specifically), thought to occur during the gestation period of a mother’s pregnancy. Systemic mastocytosis (SM) is a multi system disease that results when the gene mutation we are born with tells our bone marrow to create excessive numbers of mast cells. We’ve all been taught that sometimes even too much of a good thing can be bad. This is no different. Mast cells are a type of white blood cell found in connective tissues that are a part of the immune response. Like guards to a castle, our mast cells protect our body from threats and shoot out mediators like histamine, leukotrienes, and cytokines when our body feels attacked. Because my body produces too many mast cells, they go into overdrive when provoked, infiltrating my organs and wrecking havoc. On a daily basis my body responds overwhelmingly by throwing itself into various forms of internal and external anaphylaxis. The symptoms are pervasive as a result and because there is no cure, daily symptomatic medication is our only relief at this time. That is unless the disease has progressed into a cancer where chemotherapy, a blood transfusion, or bone marrow transplant are deemed the most suitable treatment options.

My diagnostic journey began in March 2020 days before COVID hit and after my dermatologist suspected the condition originally claimed by the practice was incorrect. My skin punch biopsy and blood work returned with positive diagnostic criteria for SM. It was then, after three decades of living without symptoms, that my journey, the one familiar to so many rare patients began. I was quickly referred to the Washington Cancer Institute in Washington, D.C. for a bone marrow biopsy before being recommended to the National Institutes of Allergy and Infectious Diseases (NIAID) for specialized consultation. And upon acceptance to the institute, NIH invited me to trial a new biological therapy not yet approved by the FDA. And although there is no cure for SM, I was offered the opportunity to donate my body to medical research and contribute to the progress of improving the quality of life treatments for those of us living with rare diseases. For all of 2020-2021, through a global pandemic and the death of my father, I spent a year frequenting NIH for diagnostic testing and biweekly treatment as a patient on the double blind placebo study. Writing became my outlet and I captured the details of my journey in a blog at

My growth with and through this illness so far has taught me what I imagine many of us living with incurable diseases face each day. Any form of diagnosis comes with a natural grieving process; I had to push through the loss of my physical wellness and accept a life that brought limitations I never before had to accommodate. I had to make choices about how I would live with this disease rather than giving it power to define me. I was tasked with reevaluating what yielded joy in life and find outlets and acceptance in unconventional ways. And because I was born with a healthy body, it took me a bit of time to feel the loss of that privilege. I tasted that existence in a way a person born sick may not—to have and to lose rather than to never have at all – required a different kind of endurance I underestimated. I have been facing the realities of death in my early 30’s and considering such, the relationship I have to time has changed indefinitely.

My experience has also shown me how the true incomprehensible matters about illness are really grounded in the psychological turmoil and emotional fatigue that shadow the symptoms. It’s accepting how some rare patients discouragingly spend years or even decades with no answers or incorrect diagnoses because even the experts providing our care struggle to identify and treat a disease no one really has. It’s being asked to pay $30,000 a month for medication because drug companies, who make profits from sales, won’t invest in research or solutions for a customer population so small. It’s the gymnastics that rare patients do with insurance companies and living in fear of cost adjustments or career moves that could unpin our survival. It’s feeling like prisoners to our medication regimen and every side effect that comes along with it. It’s the lack of community and loneliness in enduring what no one else understands and worrying how or when the condition may progress.

Growing into my stripes has provoked an identity crisis like no other, but it has also built my confidence for living purposefully. Some things, like this, get decided for us. We all have to play by the hand that we are dealt. And though transition and challenge is no walk in the park, I believe we all have the power to control the narrative we tell ourselves. Don’t get me wrong, I have my bad days, and sometimes bad weeks. Quite frankly, it would be easy to fold. But at that point are we even living or just really existing everyday and giving power to the conditions outside of ourselves? Nope, we must reclaim our own story. We must embrace our weaknesses, see beauty in our flaws, add a little sugar to our lemonade, cry when we have to, and move onto being our next best Zebra self!