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theelephantproject · The Elephant Project

Group Information

  • Members: 128
  • Category: Support
  • Founded: Jun 12, 2011
  • Language: English
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Activity within 7 days:

1 New Member - 1 New Link - 71 New Messages

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: Really odd symptoms that I just can't get my head around...
Can heparin levels spike randomly (ie/no trigger event)? ... From: Doozlygirl <doozlygirl@...> Subject: Re: [theelephantproject] Really odd symptoms that
Posted - Tue May 21, 2013 2:02 am
Daniel
drledford93
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Re: Really odd symptoms that I just can't get my head around...
I've had bleeding episodes that Dr Afrin attributed to mast cell heparin release, (and yup dripping kind, also).  My heparin levels were 3X normal on testing
Posted - Tue May 21, 2013 1:31 am
Doozlygirl
doozlygirl...
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Re: Really odd symptoms that I just can't get my head around...
That's about as likely as anything right now.  Previously, all tests showed OK but then again, low levels to them are OK...no joke!  =( ... From: Liza Sauls
Posted - Tue May 21, 2013 12:08 am
Daniel
drledford93
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Re: Really odd symptoms that I just can't get my head around...
a deficiency affecting the muscles? Maybe possible the inside muscles are being affected too? ... From: Daniel <drledford93@...> To: theelephantproject
Posted - Mon May 20, 2013 10:32 pm
Liza Sauls
lizasauls
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Re: Really odd symptoms that I just can't get my head around...
It's possible, for sure.  However, I haven't eaten anything different.  (I only eat about 8-10 different foods, all checked out.)  It comes and goes.  This
Posted - Mon May 20, 2013 9:46 pm
Daniel
drledford93
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Message History

Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec
2013 576 500 627 685 247
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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