What Does Living With Mast Cell Disease Feel Like?

Ever wonder what mast cell degranulation feels like?

Here are some patient testimonials describing their symptoms and how mast cell activation disease impacts their lives.

These are taken from the video “Mast Cell Activation Symptomology” produced by tmsforacure.org (The Mastocytosis Society).

Sometimes I get a bellyache. I feel a little itchy and a little red.


You can feel perfectly fine when you get up in the morning and get dressed to go somewhere. And as you’re going out the door you can suddenly get chest pain or abdominal pain and your plans are waylaid.

Definitely the abdominal pain, bloating and diarrhea are the ones that interrupt my life most frequently.


In the last year or so I’ve been unable to eat pickles and anything fermented. Peppers have become a trigger for me. It’s kind of an adventure. Sometimes you can get by with a little bit, but the next day it’ll hit ya.

Sun. Sun has been a trigger. Heat primarily more than the sun. The sun will make you kinda itchy but the heat itself will make me lightheaded, nasally, and if I’m in the heat too long I’ll get achy and tired and just unable to think very well.


Sometimes as patients it is difficult for us to explain this extremely complex disease, especially when we are in the throes of degranulation, but as a patient I can definitely relate to all of these descriptions. It negatively impacts and often controls your life.

Whether you are a patient or a caregiver, I highly encourage you to watch this entire video series by clicking >>> here. Scroll down the page to this and other great videos made by the experts of mast cell disorders, including mastocytosis and mast cell activation disease or syndrome.

You can read more patient testimonials by clicking the drop down links on the MCAD Stories tab at the top of the page here (you can also submit your own).

Also, please visit the wonderful folks over at The Mastocytosis Society for more information on living with — and caring for patients with — mast cell disease. While you’re there, please donate to their cause so they can continue to do more research and hopefully find a cure someday.


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