For Meresa, one of the hardest parts of living with mast cell activation syndrome (MCAS) is the daily uncertainty. She says, "It's still such an everyday variable disease. It really sucks a lot of the time. It's really painful. People don't understand what it is, they don't always understand what you're dealing with. You could look totally normal and feel miserable."
Mast cells play a vital part in the immune system. They release chemical mediators into the blood stream when the body is exposed to allergens. In fact, there are over 1000 mediators that mast cells can produce, including histamine and tryptase. But in mast cell activation syndrome, these cells overreact to a wide variety of stressors and can cause severe and systemic health problems. It can be extremely difficult to diagnose and treat due to the diverse individuality of how it affects people.
Meresa was lucky to have an MCAS literate doctor who diagnosed her very quickly after her health issues began, but almost a decade later she is still struggling to manage her MCAS flares. She experiences joint and nerve pain on top of severe allergic symptoms, and has been to the ER several times for anaphylactic episodes.
In this episode of the Major Pain podcast, Meresa talks with podcast host Jesse Mercury who also has MCAS. They commiserate over their shared illness, comparing and contrasting not only their lived experiences but also their medication regiments, both prescription and naturopathic. Living with a disease like MCAS can be extremely isolating, but hopefully listening to this conversation can help others going through something similar to feel less alone.