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New Mastocytosis Website (under Construction) (Read 6708 times)
Michel
Rookie
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I Love YaBB 2!
Posts: 6
New Mastocytosis Website (under Construction)
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.
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Bruce Hart
Guiding Light
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Posts: 101
Oklahoma, USA
Re: New Mastocytosis Website (under Construction)
Reply #1 -
06/01/13 at 01:07:11
That's awesome. Thanks a lot. We really need a resource for more doctors familiar with MCADs.
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DeborahW, Founder
FOUNDER/ADMIN
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Posts: 1224
USA
Re: New Mastocytosis Website (under Construction)
Reply #2 -
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.
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Feel well!
DeborahW, founder
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Michel
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I Love YaBB 2!
Posts: 6
Re: New Mastocytosis Website (under Construction)
Reply #3 -
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.
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