Yesterday, I went for a walk around the neighborhood. It was less than a kilometer trip but, trust me, I feel like if I did the triathlon (with weights in my shoulders).
As you can imagine already, I’m not a healthy person. What’s my disease? Hard to know, it’s a long living incognito.
However, these last few months, symptoms and challenges grew beyond any desirable limits.
As I said, yesterday I went for a walk. I walked slowly and carefully, but the consequences were still big.
Right after I hit home, I found myself being unable to open the door. My right hand trembled uncontrollably like if I had Parkison, so connecting the key took a while.
Once finally inside, the first mandatory thing was to take a shower. I do this because I can’t allow any smell from the exterior to get stuck in my belongings, either furniture, clothes or even walls. If that would happen, I could start having severe reactions.
I took the shower then, which, it’s worth to mention, also made me trigger. Water has chlorine and the bathroom is not the pristine place I’d like it to be (it’s shared with other family members and, sadly, it’s hard to keep it in the way it should be just for me).
The next mandatory step was to put all the clothes I just used outside into the wash machine. I have to use extra-neutral-fragance washing soup plus baking soda and vinager. But even with this extra washing efforts, I need to renew my clothes often; a few uses are more than enough to make them not usable anymore.
While I enjoyed walking a bit (it was my first walk outside home in months), the consequences were severe. ‘
First of all, the vomits. A few hours vomiting like there is no tomorrow. Then, the gut inflammation and dhiarrea. Yeah, disgusting but, mostly, extremely painful. When I’m exposed to some kind of smells, my gut instantly get swollen and then I’m trapped in the toillette trying to survive the pain. Common triggers for this specific symptoms are smells of onion, garlic, some spices (that are very usual here), etc. It could also be a rush of cold air that hit at my bell or at my lower back too. You never know.
All this is annoying, truly annoying. But then we reach the scary part: swollen throat. Near anaphylactic attacks are part of my day to day, even when I don’t get too much exposed to triggers, but they become stronger when I’m surrounded by «evil» elements during more than a few seconds.
What are these triggers and why I can’t just avoid them? I can try, but they are basically everywhere. Over the last few months, I came from reacting to a small bunch or things, to namely everything you see around. Any food, any smell… and when I mean «any», I’m not really exaggerating. It could be just drinking a bit of water, and then I find my self vomiting for hours.
But then, again, what’s this disease I have?
While I don’t have any confirmation yet (more about that later), I’m almost sure I have Mast Cell Activation Disorder (MCAD) (you can exchange the D by Disorder, or by a S from Syndrome), a systemic disease in which Mast Cell Mediators go crazy. Since Mast Cell regulate and mediate most of body functions, the consequences are global and could be a real pain and danger.
Why I couldn’t get a proper confirmed diagnosis yet? MCAD is a recently named disease (something around 2016) and while most Doctors usually ignore details about rare diseases, it’s even harder for recently named rare diseases.
To add complexity to the panorama, there are not single or simple tests to be done to confirm the condition. While some literature recommend a gut test (with some biopsy included) that can help, they also mention that it’s not deterministic: you have to catch the sample in a very specific moment. I heard of some people who did that test MULTIPLE times and they could get the positive result after a few months.
These kind of tests are also not available anywhere and not many countries have doctors with some knowledge or equipment for this condition.
Why do I suspect of MCAD? One of the reasons is that I found a support group in Facebook and it was the first time in ages that I felt like people understood me and didn’t say I was crazy or something like that.
Then the symptoms. I relate to most of them. However, since this is systemic, there are many other diseases that I should discard (also rare, hard to catch and without many specialists around, yay).
Taking MCAD Wikipedia page as a guide, I’ll list some of the symptoms I completely relate to.
Taking MCAD Wikipedia page as a guide, I’ll list some of the symptoms I completely relate to.
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