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http://mastcelldisorders.wallack.us/yabb/YaBB.pl General Mast Cell Disorders Discussion >> General Mast Cell Disorder Discussion >> Does Anyone know the Exact No. of Urticaria Pigmentosa diagnoses in the US, or Mastocytosis in gene? http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1311992173 Message started by LAM on 07/29/11 at 15:16:13

Title: Does Anyone know the Exact No. of Urticaria Pigmentosa diagnoses in the US, or Mastocytosis in gene?
Post by LAM on 07/29/11 at 15:16:13

Hello,
I was recently diagnosed with Urticaria Pigmentosa from a skin biopsy of 1 of my freckles that I just started to get 2 years ago and now cover my entire body. I am a little confused by the doctors around me. Most of them have never heard of this condition before. Does anyone know how many people in the US currently have this condition, or should I say diagnosed with it? I read there is a registry out there. Does anyone know how many is on the list? I saw it noted that it is an orphan disease under 200,000, but that is it. Any help, I would appreciate it!
Thanks,
LAM

Title: Re: Does Anyone know the Exact No. of Urticaria Pigmentosa diagnoses in the US, or Mastocytosis in gene?
Post by Lisa on 07/30/11 at 12:56:33

Hi LAM welcome to our forum! I'm sorry to hear you have UP though. Yet I hope you can find some help and answers here with us - you've come to the right place.

BTW, you've got my initials! :) I'm also LAM only with a T added now since I married.

As far as I know they say that there are perhaps 200,000 mastocytosis patients at the most within the US. Now that they've opened up the diagnosis to include MCAD, perhaps that number will increase, but probably not by hoards. It's a rare disease no matter what we do. Yet, there is no official listing. I've heard some of the researchers say 20,000, others more, but there are no official statements I believe. Most other countries don't even have a means to make a list!

As to your doctors not having heard of the disease before, this is typical worldwide! It's just such a rare disease they say that if the average doctor sees one case of mastocytosis in his office during his career that's a lot! I had a hematologist tell me it was impossible I had this disease for it was just way too rare! And he said, what's the likelihood of having a rare variant form on top of it?! I remarked - Doctor, it's not like we have a choice in the matter, do we?! If this guy only knew how rare we really are!

Just keep pushing for answers, LAM. You need to study as much as you can so that you can help learn how to control your triggers and keep yourself as healthy and safe as possible. This is why we are all here, we try to share tips and methods of finding our triggers and controlling them and if you have any questions, please don't hesitate to ask away! There's never a question that's too dumb for we all are learners when it comes to this disease!

Hugs!

LAMT :) Lisa

Title: Re: Does Anyone know the Exact No. of Urticaria Pigmentosa diagnoses in the US, or Mastocytosis in gene?
Post by peter on 08/01/11 at 13:51:53

Mastocytosis - Where are we now? - World Allergy Organization ...by O McNeill
Mastocytosis - Where are we now? Posted: July 2011 ... This article will review the definition and diagnosis of mastocytosis, and provide a literature ...

this one might help

then if we put MAST CELL ACTIVATION in well what is the true

DEFINITION of mastocytosis