My Mast Cell Disease Story

The story of Cynthia

In 2018 I was diagnosed with CIRS: Chronic inflammatory response syndrome, Adrenal Insufficiency, and was also believed to be Mast Cell Disease. I had a bone marrow biopsy and went to Emory, which confirmed the MCAS diagnosis. I’ve always had more allergies and allergic reactions than usual. I was limited in what I could eat for as long as I can remember I have multiple chronic and challenging diagnoses, but MCAS affects me the most. It has limited me so much in every part of my life.

My worst symptoms are:
Anaphylaxis! Allergic reactions of all forms, including blacking out, nausea (making it challenging to keep medicines or anything down), exhaustion, swelling, and lymphatic pressure
Simple things trigger symptoms like scents/smells, foods, loud sounds, bright lights, heat, cooking, and chemicals. I also react to standing, walking, being tired, talking, goofing around as I used to all the time, any strong emotions, unfiltered water, and so much more.

I manage my symptoms by:
Rest! Avoiding any smells as much as possible.
Limit the number of triggers I can to lower the chances of a reaction. I also take a handful of H1 & H2 antihistamines, many Mast Cell stabilizers, and supplements that help MCAS. I also have IV and injection of fluids, steroids, and so forth to stop anaphylaxis and lower the number of severe attacks.

MCAS has taught me:
Keep the faith! To not take things for granted! Believe in yourself because others don’t understand the journey. Life can change drastically, so appreciate your abilities, relationships, and chances. Be what you wish to see more of in others. Not everyone will get your journey, but there will be people that relate to you and no one else. You don’t know what people are going through, so be kind!