Sunday, November 9, 2008

i hate this article and it warrants repeating

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.


Anonymous said...

I love your blog. Many thanks. It would be great if you could write more about what your limits are and what you can do. I'm wondering how I can get out when I'm so sensitive to perfume and fragrance, but I don't shock. Don't have dx yet or drugs. Your UP back photo very helpful!

Kristy Tootle said...

I kept thinking it was a far stretch, but then again I know nothing about this disease (well very little)

Anway, thats interesting that you mention the skin cancer because I was a nervous wreck over it due to BOTH dermatologist going on and on about that Irelands welts are highly reactive to to basil cell cancer....if what you say is true...I FEEL A LOT BETTER...thanks for your blog...its been such a resource and help and thanks for reposponding:) I get a tryptase tomorrow and Irelands should be back today...

Bridget said...


As far as I know, there is no correlation between UP and skin cancer. I actually got a partial diagnosis because I did go to have a spot biopsied (Ireland may need that as well as part of the diagnostic process. It's a painless test, but make sure they use preservative free lidocaine if they do it, since we seem to react to the preservatives. also have her premedicate beforehand with antihistamines, though you will want to talk to a doctor about dosages) and it came back clear of cancer but -full- of histamines. I had it tested because my father gets basal cell cancer due to sun exposure he sustained in Vietnam (though at the very least, Basal cell carcinoma is very easily treatable and the least threatening of all the skin cancers)

I mean, people even go through UV treatments to get their UP removed, and mine are markedly lighter after i've been out in the sun. My bumps do raise if i touch them, that's called a Darier's sign, which means they are releasing histamines into the neighboring area...I generally avoid backrubs now, and sleep on my stomach to avoid irritating my back...

Some people are really bothered by their UP, though mine haven't been too bad, the only annoying one is on my ring finger on my left hand, as my engagement and wedding rings will irritate it sometimes.

Good luck today and tomorrow!

Anonymous said...

hey bridget, you mentioned that your father was in vietnam, so was mine . he was highly exposed to agent orange. one of my docs strongly suspects that his exposure might be what caused my cell mutation. just wondering if any of yours have questioned you about your fathers' exposure to it. by the way i love your blog. i have been searching for years for someone that actually understand what i am going through. i hate that you are sick but hearing your stories reminds me that i am not crazy or imagining my symptoms.

Anonymous said...

i would love to have heard the conversation between you and the writer or this article. i thimk i saw this same story on tv. i felt the same way. this kid is being set up for failure. hey, by the way, have any of you found a good treatment fot the joint, bone, and muscle pain? that is what keeps me dowm the most. some days it is to much to deal with.

Kim said...

i take an aleve a day when the pain is too much

Bridget said...

Anonymous 1) My dad was in intelligence, though he did have to run reconnaissance missions a few times. I'm not sure if he was exposed to Agent Orange any more or less than other vets (i am guessing less since he never mentioned it, though he never talks about the war so who knows. i am also guessing whatever bizarre shots he was inevitably given could be a contributor if this is in some way turns out to be a genetic or hereditary thing. I -do- know that I have had UP for at least 4 years before I became hard-core symptomatic so anything is possible.

I am glad you like the blog, I am quite flattered! I do think it's good for me to write this stuff out in general, as well as to interact with other people who "get it" because it can feel very isolating sometimes :/

Bridget said...

anonymous #2)

this was her response (I can't find my email, but it was along the lines of stating that the article was seriously misrepresenting the illness and it concerned me because a) I had seen similar articles when i first got diagnosed and was scared i had bee given a certain premature death sentence b) the cancer thing is totally off c) childhood masto patients typically fare better in some cases than adult patients, while her article was more or less treating it like an adult case. I stressed that she should include references to the TMS page or specialists for the disease to take away some of the sensationalism in case a newly diagnosed masto patient finds the article. I also stressed my concerns about the kids eating habits. My sig file had my phone number on it, which she apparently passed along to the family though i've never heard from them. I'm guessing it's easier to ask your community for money for an indoor playground than to enforce some unfun things like stricter diets ad whatever:


This story was in no means meant to be a research paper on every single case of mastocytosis in the world.
As I understand it, it is a family of diseases, meaning that different people have different reactions. (In fact, I mentioned in the story a teenage patient who had a mild case and was seen by the Boytim's pediatrician.)

This story was simply meant to be one about the Boytim family and their struggles. If you disagree with the way they are handling things, that is your opinion and you are free to have it.

I will pass along your telphone numbers to Lisa Boytim. She's eager to talk to anyone who contacted me regarding the story.

I wasn't too psyched about the "all the masto cases in all the world" when making broad and unfounded statements like UP turning into cancer and I wasn't too keen on giving the family medical advice. I told her to pass them along to either Valerie or Rita from the TMS For a Cure website, but I don't think they ever contacted them.
As for pain, I take 10k units of VitD3 1x a week and that has helped a lot. So has the Gastrocrom. Otherwise, I try to do either PT exercises for my lower back and walking exercises for my hips/legs. I also want to get back into pilates to restrengthen my core muscles to take some more stress off my bones (as I do have osteoporosis)

Bridget said...

oh also I take Tylenol for pain if it is really, I find I don't react to it, however the bulk of my meds are processed through my liver so I try to avoid Tylenol. I've also found that Benadryl helps with pain too.

In general though, I have been told by many doctors that I have an extremely high pain threshold, which I guess is good since I can't take most painkillers, but bad in that I sometimes ignore symptoms for far too long.

Anonymous said...

hey bridget, thanks for the info. i was wondering if the prednisone helped with the joint inflamation. i am on gleevec, which has been really helpful to me , but i understand that most other masto patients did not respond to it. my cell mutation differs from all the others in my clinical trial.perhaps this is why it worked for me and not them. anyway gleevec and tylenol are not to be taken together so i am told by the nih docs. i am considering asking about the methotrexate or other corticosteroid drugs. these have been very effective in the patients with the inflamatory myopathy diseases. i have spent many months using a walker, i am much improved now but terrified that the pain will put me back on the walker or in a wheelchair. this is not acceptable to me so i am willing to try anything. i guess any one with sm can relate. i do realize that excercise, rest, and atarax have relieved the pain more effectivly than nsaids and narcotics. have you experienced any weakening of your muscles?? i have trouble raising my arms, climbing steps, and standing up from a sitting position. some days it is awful and other days i have little to no pain. once, in the hospital, they gave me solumedrol[ i am a horrible speller please forgive any mistakes] and it made me feel like super woman for days. it too is in the steroid line and i was wondering if you took the prednisone for the pain.

Bridget said...

ah i did not realize you were on gleevec, I am glad that it is working for you. My doctor hasn't pushed me to getting a BMB yet because my urine histamine and tryptase levels are so high that the chances of my having the traditional bone marrow mutations are %100. Since it's Dr. Castells I'm going to trust her on this one (as opposed to if it was someone who didn't have her standing in the masto doctor world). If things progress then I will go for the test and look at more aggressive therapies.

Before my diagnosis I was put on a high steroid treatment for something else and I felt -fantastic-, better than I had in years (however I did get kind of chubby and irritable towards the end, but I still felt awesome)

Diane said...

Hi, my father was highly exposed to Agent Orange also. He now has ALS and prostate cancer- both service connected diseases known to be caused by agent orange exposure. I now have mastocytosis/MCAD and also strongly feel it is related. If anyone else has any related information please contact me at mail4diane at aol dot com. I keep seeing similar posts as this in forums and I see it has been reported as a condition of children of veterans exposed to Agent Orange, but I dont know if anyone has put together evidence of how many reports of this disease has been reported. It is a fairly rare disease and it seems that more than a few have reported themselves or a parent exposed to Agent Orange.