Living with mast cell activation syndrome (MCAS) is a truly 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.
I was diagnosed with MCAS in December 2015 after five abnormal mast cell test results and a lifetime of symptoms. I rely on medications and supplements to block or reduce the ridiculous amounts of chemical mediators released by my mast cells. I spend most of my time in solitary confinement (even pre-pandemic!) to minimize my exposure to triggers.
I also deal with the following conditions often associated with MCAS.
- Ehlers-Danlos syndrome (EDS): My connective tissue is fragile and my joints are hypermobile. So, my muscles have to work extra hard to keep everything in place. In 2018, I had a spontaneous cerebrospinal fluid leak, a complication of EDS.
- Dysautonomia: When I stand up, my blood pressure spikes. During my first few years of my MCAS diagnosis, my heart rate would spike also. There are many types of dysautonomia, dysfunction of the nervous system, including Postural Orthostatic Tachycardia Syndrome (POTS). Read more about dysautonomia and autonomic testing.
- Interstitial cystitis (IC): Inflammation of the urinary tract is a very common symptom of MCAS. I began experiencing symptoms at age 3. Salicylates are my biggest urinary tract trigger. My right ureter swells and spasms often causing obstructions and pain in my right kidney.
- Premenstrual dysphoric disorder (PMDD): I have severe mast cell reactions to normal hormone fluctuations. I take continuous hormone pills to suppress fluctuations and avoid reactions.
- Food sensitivities: soy, salicylates, histamine, FODMAPs, and gluten.
I am currently in remission of mast cell activation syndrome (MCAS) taking doxycycline, in addition to a basic mix of first line treatment. Unfortunately, every patient is different, so my treatment is unlikely to put most patients into remission. However, my remission has demonstrated how mast cell activation may be underappreciated when it comes to Ehlers-Danlos syndrome (EDS) and dysautonomia. My MCAS treatment has eliminated my symptoms of EDS and dysuatonomia. Learn more about my remission:
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