this is one of the biggest pieces of incendiary, poorly researched things I've ever read. Firstoff, the child is not getting proper treatment because he's part of a research trial, something in my mind a child should never be part of because they cannot consent to it. Even as an adult I am leery of being part of a research trial because I will have little control over my medications if they do/don't work for me since the whole part of a research trial is generally to research specific elements of a treatment protocol.
Second, the kids diet is complete and utter garbage. Many people with masto do incredibly well on organic diets, low histamine diets, or low salicylate diets. These diets are typically low in additives, preservatives, allergens, etc. Sure it might be a pain in the neck to cook the majority of your food, but then -you- are in control. You know what is going in to you, you know what makes you react and what doesn't. Fatty fast food isn't good for anyone, let alone someone with a compromised immune system. If you are worried about your bones, you eat yogurt, drink milk, get vitamin d (esp from the sun), if you are worried about your tummy you fill it with good, healthy, whole foods. You don't lock yourself or your child away in an indoor playroom and hope for the best.
Thirdly, myself and a few other masto patients contacted the author of the article because we felt the modern day leper manner in which she portrayed masto patients was inaccurate, based on the anecdotal evidence presented by -one- family, based on their rather extreme ways in trying to manage their child's life. We were all met with hostile or short responses that mainly consisted of "well this isn't meant to explain the entirety of mastocytosis, just this one situation, I wasn't doing a research piece, just a human interest one". So so much for journalistic integrity! You write a typical "OMG ALLERGIC TO THE WORLD" piece on a rare disease, offer -no- resources for people who will inevitably find it when they google mastocytosis, and don't even care that you're article is innacurate.
Fourth and most disgusting and most misleading is the idea that his urticarea pigmentosa can turn into cancer. Complete and utter unfounded bullshit. It just doesn't happen. There is a slim, slim slim slim slim chance that mastocytosis can turn into mast cell leukemia. My doctor (Dr. Marianna Castells) is one of the leading researchers and physicians treating mast cell diseases and in her career she's seen around -2- cases go that route, and it had nothing to do with the UP. I showed this article to her and she felt it was a travesty.
Fifth - the kid has never even had to use epi. This could indeed be because he's locked in the basement eating crap and wearing a diaper, it could be because he won't ever go into full shock (i haven't and my tryptase level is through the roof, and as you can see elsewhere in this journal I am covered with UP). I go out, I get stung by mosquitoes, I go running to increase my bone mass, i mean, yes I am limited in many ways, but I am not a shut in to the degree the Boytim child is, and if I ever get to that point I don't know what I'd do. It's not living, that much is certain.
In the end, this article is written for one specific purpose: to help raise awareness for a fundraiser the family is holding to build a completely unnecessary indoor playroom for their child who they are convinced is going to die if he steps outdoors. Well, I have news for them; I know people who had childhood masto who grew up to be doctors at one of the best hospitals in the country, I know people who have run marathons, who are teachers, researchers, people who live fulfilling lives that include venturing outside.
So I beseach you, people who find my blog, don't take that article at face value. It is, admitted by the author, a human interest piece that is not meant to represent mastocytosis, had no research done other than the experiences of the family in question (whose own treatment of their child is incredibly risky and ridiculous) and one immunologist who I have -never- seen listed in any list of mast cell specialists.