Being Allergic To Life
Adding to the fun things our bodies have against us, the last acronym up in the “evil triad” is MCAS. MCAS stands for Mast Cell Activation Syndrome. If I don’t want people edging away from the crazy lady I simply tell them that MCAS means I’m allergic to life. Pretty much anything can set off any type of reaction in my body, some triggers I know, many I don’t and I leave it there. For those wanting to go a little deeper into what MCAS actually is however, read on for a very basic education.
Mast cells are a fascinating little cell. They’re a white blood cell “born” in the bone marrow (for any medical folks reading this, please forgive me a little literary license) and then they spread out throughout the body en masse. Although they can be found pretty much anywhere in the body, they generally like to congregate at interfaces such as the pulmonary tract, the GI tract, skin, connective tissues, etc. They are the original jack-of-all-trades police officer immune system cell and they can release over 2,000+ mediators. Some immune cells are so specialized that they only do their job in response to one specific issue, but not these little dudes. But what are mediators you ask? Mediators are the chemicals stored inside the mast cell that they release in response to threats. Threats such as snake venom, pollens, bacterias, etc. The mast cell can also release a mediator within microseconds of a perceived threat whereas other immune cells can take up to hours to get going. The mast cells are a hugely complex part of the immune system and they do their job wonderfully – when they are actually functionally properly.
The problem with MCAS is that the mast cell isn’t functioning properly. It is perceiving threats from all over the place and releasing mediators incorrectly; either in the incorrect dosage, or for the incorrect length of time, or at the wrong time entirely. You could say that the mast cells are a little trigger happy. The problem with this is that the body is biologically programmed to respond to the mediator regardless of what else is going on in the body. Therefore if a mast cell releases mediator A, which is programmed to make your skin itch, and it’s releasing a flood of them on your upper arms to a perceived threat even though you simply decided to take a hot shower, well, then your stuck with itchy arms until you can get the mast cells to chill out.
What are these perceived threats, these triggers? Wellll, they could be pretty much anything. Temperature changes, stress, food, chemicals, incoming weather, dyes, binders in pills, fumes, smoke, allergens, pets, drinks, etc. It really is an unending list and a person with MCAS is constantly tweaking their lifestyle and diet in order to find the best balance for their body. What do the mediators do? Again, it’s an exhaustive list that ranges from headaches, to brain fog, to itchy eyes, to nose bleeds, to IBS symptoms, to reproductive issues in women, to joint/muscle pain, to hives, even to anaphylaxis. Even though two people may both have MCAS, they may look entirely different in their symptomology. The only characteristic that they may share is that there will be multiple body systems involved in a state of chronic inflammation.
So how does one go about helping those with MCAS? The first line of defense most doctors recommend is a blockade of both an H1 and an H2 histamine blocker. Between the two drugs a nice blanket is laid down on the mast cells and encourages them to calm down. There are other medications in addition to an HI/H2 blockade that are also available as often it takes many months (sometimes years) of trial and error before a right combination of medications can be found that an MCAS patient can both tolerate and see results from. Dietary and environmental/lifestyle changes are also highly recommended as patients begin to figure out their triggers. For instance, if dairy is a trigger then they know to avoid dairy. Similarly if they discover fragrance is an issue then switching to fragrance free toiletries and detergents may be worthwhile. It is a long process, often a lifelong one, as an MCAS patient figures out how to best manage their disease.
Once again we awesome zebras have a disease that is multi-systemic and presents uniquely to each person in a medical system that is not designed to handle such an illness. In fact, MCAS didn’t even become a recognized disease until 2010 (aka it didn’t have any diagnostic criteria, although technically it was named in 2007 after being theorized in 1991, and it wasn’t until 2016 that it was assigned a ICD-10 code). Mast cells are such a new area of research (they were first discovered in 1877) and are so complex that very little is known about them. Many practitioners haven’t even heard of Mast Cell Activation Syndrome and it is again left up to the patient to do their own research and learn about this disease by themselves. Thankfully as technology becomes more advanced and information becomes more readily available, more and more is being learned about this disease and information is becoming more widespread.
Between the three diseases of the evil triad hEDS, POTS, and MCAS we zebras oftentimes feel like we are hostages of our own bodies. Besides questioning our own sanity, we are quite often compromised in the medical system and even judged in a world that is ignorant of our diseases. It is my hope, and likewise the hope of many zebras, that we can spread knowledge about our stripes and begin instituting changes in the medical system so we can help all the amazing undiagnosed zebra warriors and all the zebra warriors to come.
