Living with mast cell activation syndrome (MCAS) can be an isolating experience, not only because it’s debilitating, but it is extremely difficult to understand. MCAS is complicated and unique to each individual. My goal is to raise awareness about MCAS, chronic illness, and disability through humor.
Diagnosis
I was diagnosed with MCAS in December 2015 after five abnormal mast cell test results and a lifetime of symptoms. From 2015 to 2021, I relied on many medications to reduce and block the ridiculous amounts of chemical mediators released by my mast cells. I spent most of my time in solitary confinement (even pre-pandemic!) to minimize my exposure to triggers. During this time, I wrote more than 100 blog posts about the challenges of living with MCAS as I experienced them.
Remission
In 2021, after five years of trialing treatments, my mast cell activation syndrome (MCAS) symptoms went into remission while I was taking a combination of medications. I believe the following factors also supported my remission:
- A primary care doctor with the time and willingness to problem solve
- Disability accommodations
- MCAS friendships
- Avoiding unnecessary stress, including non-critical surgeries and procedures
- Resting, but never giving up
I no longer experience the following health conditions in MCAS remission:
- Dysautonomia: There are many types of dysautonomia, dysfunction of the nervous system, including Postural Orthostatic Tachycardia Syndrome (POTS). Read more about dysautonomia and autonomic testing.
- Subluxations from Ehlers-Danlos syndrome (EDS): With increased joint stability in remission, I became a competitive figure skater.
- Interstitial cystitis (IC): Inflammation of the urinary tract is a very common symptom of MCAS. I began experiencing symptoms at age 3. Salicylates were my biggest urinary tract trigger. My right ureter used to swell and spasm often causing obstructions and pain in my right kidney.
- Premenstrual dysphoric disorder (PMDD): I used to take continuous hormone pills to suppress fluctuations and avoid reactions.
- Food sensitivities: salicylates, histamine, FODMAPs (including soy), and gluten.
In 2024, I slowly tapered off my MCAS medications without any symptoms. To my surprise, I also regained my adrenal function, although it did require an extraordinary amount of diligence. Although my body does have permanent damage from MCAS, I continue to heal in ways I never expected.
Although I have written about many of the treatments I have tried, I do not share the specific medication names and doses. Mast cell mutations, mediator release, and risks vary patient by patient, so copying someone else’s treatment is usually ineffective and can be harmful. Every MCAS patients needs to go through the trial and error process individually–there are more than 70 treatments options!
I wrote about my remission as it was happening–partly due to my uncontainable joy and partly because I wanted people to understand how positively life-changing a MCAS diagnosis and treatment can be. Read more my MCAS remission experience.
Support my work
Have my blog, videos, or graphics helped you? Do you want to help me to continue create resources to raise awareness about MCAS among patients, health care providers, family, and friends? Would you like more updates on my remission and continued healing?
Support my work on PatreonI rely on patrons to help me pay for this blog, captioning, graphic design software and other tools! Your support demonstrates you want this blog to continue. You can become a patron for as little as $3/month and get access to patron-only previews of upcoming posts and projects, as well as personal updates about my treatment and healing.
Thank you to my existing patrons keeping this blog going!
My latest interview
Additional interviews
- November 2020: Finding Your Range with Jeannie Di Bon
- June 2021: Standing Up to POTS Podcast
- December 2021: Finding Your Range with Jeannie Di Bon
Disclaimer
This website is for educational and entertainment purposes only and not intended to be a substitute for medical advice, diagnosis, or treatment. Always seek the advice of a qualified medical professional with any questions you may have regarding a medical condition.
All content contained on this web page is copyrighted. Feel free to share direct links, but please ask if you’d like to use text or a photo. I encourage re-sharing my social media graphics, but please tag me in the post if you copy and paste.
Contact me at hellsbellsandmastcells@gmail.com.