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Description

THE ELEPHANT PROJECT

This is an international group dedicated to supporting patients who suffer from a specific triad of disorders: Autonomic Dysfunction (such as POTS, NMH, NCS), Mast Cell Disorders (such as Mastocytosis, MCAS) and Hereditary Connective Tissue Disorder (such as EDS, Marfan's)

When three supposedly rare illness occur at once, physicians tend to focus on their specific area of expertise without looking at the WHOLE patient. This is reminiscent of the fable about the three blind men who each describe an elephant by feeling three distinct parts (the trunk, body, and tail)- never realizing they are all describing the SAME animal. Our goal is to provide a place for patients to gather, to share their stories, and to collect information for physicians to advance understanding of why this unique constellation of disorders occurs.

Sufferers, their family members, caregivers, interested physicians, and ALL who want to learn more about this triad of illnesses are welcome.

Most Recent Messages

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Re: Stilll alive and kicking, but wisdom tooth extraction question
Welcome back carol!! Encountered some of this for OR planning and now dental planning My dental procedure is going to be done in the hospital with anesthesia
Posted - Sat May 25, 2013 12:46 pm
Rtrbot
anaphylaxing
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Re: From a book by Vandy Group
This is a big jump from a baby aspirin I know but since you were considering ibuprofen, maybe ask you doctor about Vimovo? He/she may be open to give it to you
Posted - Sat May 25, 2013 11:12 am
danihillier75
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Re: (unknown)
There can be something you ate that inflames it too. One of my daughter's triggers for gallbladder pain was a combo of fat/bread...think pastrami sandwich!
Posted - Sat May 25, 2013 7:50 am
Liza Sauls
lizasauls
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Re: have this mutation
See, I am missing that gene-the one that helps you smell a rat. :) I'm so bad at this. But good for you Gail. Can you donate some of that gene to me? I
Posted - Sat May 25, 2013 5:55 am
maiysa1
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Re: (unknown)
OH that is good to know. Will look it up. I do beet juice now and then. It's a bit much though. But if it saves me from surgery, I will do it. They never
Posted - Sat May 25, 2013 5:42 am
maiysa1
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Message History

Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec
2013 576 500 627 685 376
2012 1358 687 857 891 1003 453 1115 430 557 439 254 324
2011 136 156 76 14 327 452 171

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