Mast Cell Disorders Forum

Mast Cell Disorders Forum
http://mastcelldisorders.wallack.us/yabb/YaBB.pl Links >> Links >> New Mastocytosis Website (under Construction) http://mastcelldisorders.wallack.us/yabb/YaBB.pl?num=1369914400 Message started by Michel on 05/30/13 at 00:46:39

Title: New Mastocytosis Website (under Construction)
Post by Michel on 05/30/13 at 00:46:39

New build of the website uploaded

http://meandmymastcells.com/

Looks a bit more enticing, still loads of work needed but aiming for June 14th launch. What's there already is reasonably usable. Glossary is now up to 246 items, will likely be over 700 when finished.

I have added the following doctors:

FL Mark Stein
CA Suzanne Teuber
CA Rosemary Hallett
CA Eric Gershwin
GA Farrukh Awan
NY Anne Maitland
UT Richard Frame
CO Richard Weber
CO Stephen Dreskin
TN Andrew Singer
TN Phil Lieberman
TN John Farenholz
TX Henry Legere
NC Frank Lichtenberger
CA Jason Gotlib
CA Tery Chin
OH Fred Hsie
MA Cem Akin
MA Mariana Castells
MA Theoharis Theoharides
SC Larry Afrin
London, UK Clive Grattan
Dundee, Scotland Dr, Robert Dawe
Madrid, Spain Dr.Luis Escribano

Still more to come ...

http://meandmymastcells.com/category/the-doctors/

If you are being treated by one of these doctors, it would be great if you would comment on their expertise for the benefit of all

http://meandmymastcells.com/forum

A Compendium Of Information About Mastocytosis

If you wish to contribute any topics for the site, I'd be more than grateful, as this is taking a lot of type to build.

Title: Re: New Mastocytosis Website (under Construction)
Post by Bruce Hart on 06/01/13 at 01:07:11

That's awesome. Thanks a lot. We really need a resource for more doctors familiar with MCADs.

Title: Re: New Mastocytosis Website (under Construction)
Post by DeborahW, Founder on 06/02/13 at 06:40:00

Please keep in mind that the doctors listed on that website are merely a collection of doctors that the website owner (Michel) has found mentioned to be familiar with mast cell disease. Does this mean that these doctors actually are knowledgeable or specialists? No, Michel has told me that many of the doctors have been mentioned on our forum by a patient, but that is it. Michel had a disclaimer up that none of the information on the website (including the doctors) should be considered as recommended (or not recommeneded) by the website owner. It is there just as information for you to do with as you wish.

So, what I am saying is that you need to do your own research on a doctor on a list. Just because a doctor claims he or she is a Masto specialist or knowledgeable about it, doesn't mean he or she is. That doctor may THINK he knows all about mast cell disease, but may be wrong in his information or knowledge. Thus, even if she is well meaning, he might actually suggest remedies that hurt rather than help.

For myself, I tend to watch for a doctor that is repeatedly mentioned with good results by multiple patients. Then I would feel more comfortable knowing others (not just one patient) have actually been helped. Of course, there are only a handful of true specialists in the US and a few others worldwide who we would consider truly knowledgeable as to how to help us.

Title: Re: New Mastocytosis Website (under Construction)
Post by Michel on 06/09/13 at 09:32:07

To amplify what Deborah has said, apart from the world-class ones (Castells, Afrin, Escribano, Grattan, Akin and Theoharides), virtually all the other doctors have been found on this forum. As Deborah said, you MUST do your own due diligence.