Five years ago, on December 22, I was diagnosed with mast cell activation syndrome.
As I entered the university’s cancer clinic, greeted by Christmas decorations and a volunteer dressed as an elf, I braced for a possible death sentence. For better or worse, my pain and exhaustion numbed my fear. I had spent the entire year unsuccessfully pleading with doctors to help me as I lost my ability to eat, move, think, and sleep. All I knew for sure was my lab work was positive and something was wrong with my mast cells.
Of course, I had never heard of a mast cell and I had to wait for an appointment. One lab test noted, “Systemic mast cell disease is a heterogeneous disorder.” So I googled “systemic mast cell disease.” After reading Mayo Clinic’s page several times, I surmised I had two diagnostic possibilities: systemic mastocytosis or mast cell leukemia. The median survival rate of mast cell leukemia after diagnosis was 6 months. I joined Facebook groups for mastocytosis, where some people briefly mentioned “a newer condition called MCAS,” but nobody could tell me if I was going to die.
Spoiler alert: I’m not dead yet.
While I felt like the most tragic soul on the planet sitting in that cancer clinic waiting room and glaring at the cheerful elf, I know now my diagnosis was arguably a Christmas miracle. I had walked a mere 5 blocks across campus and paid a $35 copay with no awareness that I was seeing a world-leading specialist. I had no idea my diagnosis would explain a lifetime of health challenges literally starting from birth (e.g. anemia, food intolerances, interstitial cystitis).
Thankfully, I also had no idea the ridiculous amounts of science and policy I would need to learn to stay alive. On the five-year anniversary of my MCAS diagnosis, I would like a damn degree.
To my fellow MCAS badasses, I want to say MCAS gets easier. To everyone else, I want you to know every day is a painful nightmare. It is really a combination of both. You collect tools and learn how to adapt.
How I describe the past five years:
- Year 1: Total destruction and despair
- Year 2: Renovating my life
- Year 3: Building a support system
- Year 4: Survival and self-advocacy
- Year 5: Dreaming again
For me, 2015 was much harder than 2020. Although MCAS wasn’t a death sentence, it did feel like torture. Every day was painful and treacherous. It felt like no one was willing or able to help me. Isolating wasn’t enough. While I know how lucky I was for receiving a diagnosis, I am certain an earlier diagnosis could have prevented the worst year of my life. This is why I get so upset that affordable MCAS testing and evaluation is no longer available at the university, let alone in Minnesota. At least, there’s a lot more information and support online today.
Today, I celebrate my diagnosis and the healing it has provided through treatments and accommodations. Tomorrow, I continue fighting for access to MCAS testing and treatment.
Congratulations! what a journey. I just got my “possibly” MCAS diagnosis after a visit to the ER. However, I can’t find a doctor that can help me. My regular doctor thinks all of it is my head (frustrating). Did you have any luck finding a doctor in MN that can help?
Thank you.
The Facebook group Minnesota Mast Cell Disease Community has a list of specialists.
My sister lives in Minnesota, and found that most of the MCAS specialists there are either not in-network for insurance or don’t take insurance at all. Dr. Maryam Saifi is located in Dallas, TX, but she takes out-of-state patients (via zoom, skype, facetime, etc), and accepts most insurances. My sister has been a patient of hers for about 6 months now. Please try her office if you still can’t find an affordable specialist near you. https://www.aircaremd.com/provider.html
Sincerely,
Another MCAS patient
Are they licensed in Minnesota? The state emergency executive order ending the licensure requirement ended in May.