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