Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Links >> Links >> Rare-List you must see it to believe it http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1331259416 Message started by peter on 03/08/12 at 14:16:56

Title: Rare-List you must see it to believe it
Post by peter on 03/08/12 at 14:16:56

http://www.woi-tv.com/story/16647927/the-rare-list-you-must-see-it-to-believe-it

Title: Re: Rare-List you must see it to believe it
Post by Joan on 03/08/12 at 19:26:14

Did you notice that mastocytic enterocolitis, cutaneous mastocytosis, mastocytosis, and systemic mastocytosis were all listed separately? Didn't have time to see if there were more.

Title: Re: Rare-List you must see it to believe it
Post by peter on 03/09/12 at 09:50:41

The list shows how over the years MAD MEDICAL science has got
I bet the same mechanism coueses symptoms in theses
diseases-disorderes- syndroms and the diffrent names are there to comfuses and dvide That is the OLD way things are changing now
i hope

Title: Re: Rare-List you must see it to believe it
Post by Joan on 03/10/12 at 16:19:01

Except for the general term, mastocytosis, the others specifically refer to different primary problems. M.E. refers to a problem confined to the GI tract, and it can be caused by too many clonal or non-clonal mast cells. Cutaneous, of course, refers to a problem predominantly in the skin, while systemic means the entire body.

I think the separate names are intended to be more specific diagnoses than a general term, especially since the treatment varies somewhat for each. I agree that the same basic mechanism probably causes them, in that some cases show a gene defect and some don't, while all of them indicate mast cell activation. They all fall under the broadest category, Mast Cell Disorders.

Title: Re: Rare-List you must see it to believe it
Post by peter on 03/10/12 at 20:20:04

hi joan sorry i ment the hole 7000 names on the list
but your post is very good anyway
in 10 years the list maybe 1000

Title: Re: Rare-List you must see it to believe it
Post by Joan on 03/11/12 at 05:47:55

Good point. Diagnosing is getting much better, so sometime enough people will be diagnosed to take the disease off the list. I think this will happen with mastocytic enterocolitis. My doctor alone has verified over 400 cases it it by biopsy.