Living with MCAS is a truly an isolating experience, not only because it’s debilitating, but it is extremely difficult to understand. The rules of the disease are dynamic and unique to each individual. It is hard to educate others when you are learning yourself. My goal is to inspire hope, empathy, and humor by sharing my experiences through this blog.
I was diagnosed with MCAS in December 2015 after five abnormal mast cell test results and a lifetime of symptoms. I rely on medication to block or reduce the ridiculous amounts of chemical mediators released by my mast cells. I spend most of my time in solitary confinement to minimize my exposure to triggers.
I also deal with the following comorbidities. Treating MCAS helps me reduce the symptoms of these conditions.
- Ehlers-Danlos syndrome (EDS): My connective tissue is fragile and my joints are hypermobile. Most recently, I had a spontaneous cerebrospinal fluid leak, a common complication of EDS. Read more.
- Hyperadrenergic Postural Orthostatic Tachycardia Syndrome (POTS): When I stand up and my MCAS symptoms are not well-controlled, my heart rate and blood pressure spike and my hands tremor.
- Interstitial cystitis and nephritis: Inflammation of the urinary tract is a very common symptom of MCAS. I began experiencing symptoms at age 3. Kidney stones worsened reactions in my right kidney. Read more.
- 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. Read more.
Thank you Ann, Tamsyn, Stephanie, Kathryn, Kelly, Jenna and Ben, Bree, Molly, Deserae, and Jocelyn for supporting this blog on Patreon! You can become a patron for as little as $1/month and get access to patron-only posts about my MCAS treatment.
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