mcas

“Rare disease makes woman allergic to everything, including her husband”

In honor of Rare Disease Day (February 28th), here’s  a today.com story about a woman who has a more severe form of the illness/disease I have. A few quotes:

“Johanna Watkins, 30, is allergic to almost everything and everyone, including her husband Scott, 29. She’s been diagnosed with mast cell activation syndrome, a rare and progressive immunological condition.”

“She has a list of 15 foods she can eat and that’s it. Even those foods make her feel ill, it’s just that they don’t kill her. She’s eaten the same two meals for two years.”

Update: In 2016 Johanna wrote this article, What I’ve learned being isolated and allergic to everything.

(The image is from the today.com story.)

Symptoms of mast cell disease (image)

This image shows the symptoms of mast cell disease. I’ve had every one of those (except for that gynecological ones). For years I just assumed that everyone went through this. The image comes from The Mastocytosis Society website.

Update: I noticed that they missed a few things, including unusual/allergic reactions to medications and insect bites.

“Raccoon eyes” (detecting health problems)

I don’t know about everything shown on this image, but for the last few months I have noticed that I have “raccoon eyes” at times, meaning that I develop really dark areas under my eyes. As the image shows, this is probably from allergies and/or food intolerances, which — thanks to MCAS — I can now confirm.

(I found this image on this Pinterest page.)

Fifty Shades of Mast Cell Activation Disease (MCAD/MCAS) alvin September 23, 2019 - 5:31pm

Notes from September 24, 2016:

Doctor: I’d like to collect a bone marrow sample ...

*Al runs out of the hospital in a hospital gown, screaming like a little girl*


(later, after they caught me)

Doctor: The next time you break out in a rash, hives, or blisters, I want you to have those biopsied.

Me: Is there going to be any part of our relationship that doesn’t involve a lot of pain on my part?

Doc: Yes, pee in this cup, and we’ll look at it under a fluorescent light to see if you have the same disease that King George III had.

Me: The crazy one?

Doc: Yes.

Me: Cool.

Making an “If I’m dead” video

A humbling thing about this MCAS disease is that I just took the time to make an, “If I’m dead, here’s everything you need to know about how to update this Drupal 8 website” video.

Hopefully I’ll still be around for Drupal 9 — or my own replacement for Drupal — but when I get sick I always wish I had done this, so now I have.

This week in mast cell disease (MCAS)

This week in mast cell disease (MCAS) included temporary kidney shutdown on Wednesday (swollen feet and ankles), insane migraine Thursday, fake heart attack Friday, and hives on Saturday. I used to think it was going to kill me, but now I think it’s just here to torture me.

Feeling like I was poisoned (or toxic shock syndrome, anaphylactic shock, or sepsis)

As a brief note today, when I got really sick in the years 2014-2017, I used to tell my doctors that I feel like I’ve been poisoned. As I learned more, I’d tell them that it felt like toxic shock syndrome, anaphylactic shock (anaphylaxis), or sepsis, because it felt like I was about to go unconscious (pass out, also known as syncope). Indeed, I did lose consciousness seven times.

They all looked at me like I was crazy when I told them these things, but it turns out I was right: I have a rare blood disease named Mast Cell Activation Syndrome, or MCAS. It’s a disease of your body’s mast cells, which are a type of white blood cell. If you have MCAS you essentially have been poisoned, because your body’s white blood cells are reacting to something in the environment — something you ate, drank, smelled, touched, breathed.

If you feel like you have symptoms like these I encourage you to learn more about MCAS, either by following the first link to Wikipedia, or by following this link to my blog posts about MCAS.

I’m still in here

Sometimes when I get really sick with the MCAS symptoms it becomes very hard for me to communicate. If I’m with someone else during those episodes and they look at me struggling I think, “I’m still Al, I’m still in here ... I just can’t get the words out.”

I think sometimes that’s the way it is for people when they get older and slow down, or have dementia, I imagine they have those thoughts as well.

MCAS/MCAD: What an activated mast cell looks like

At some point somebody was like, “Let’s get a mast cell — a type of white blood cell — from a bone marrow biopsy, magnify it 1,000 times, piss it off, and see what happens.”

The result? Ka-boom! It looks like a little firework went off when it released its histamine, tryptase, serotonin, superoxide, heparin, thromboxane, PGD2, PAF, and other granules.

That’s pretty much what it feels like, lol. I used to tell doctors that it felt like I had been drugged, and indeed, I was.

(Image from this nih.org research paper.)