mast cell disease

“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) alvin January 2, 2020 - 7:15am

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.

I don’t always get sick, but when I do ... alvin December 11, 2019 - 8:25pm

I don’t always get sick, but when I do ... it’s nice to find other people who are going through what I’ve been going through, and they still have a sense of humor about it. If you have a Pinterest account, this “My Mastocytosis” page is great.

“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)

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 alvin August 4, 2019 - 2:28pm

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.

Doctor: I’ve only seen that once before in my life

A funny thing about mast cell disease is when a 60+ year old doctor who is considered one of the best in his profession says to you, “I’ve only seen that once before in my life.” With MCAS, you get used to statements like that.

(This happened in 2016, but I was reminded of it again today.)

The long road back

I’m glad to say that I’ll be going back to regular consulting work again very soon. If you’re interested in the gory medical details that led me to quit consulting work (and write five computer programming books and a couple thousand blog posts), here you go: