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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:

2 New Members - 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: Another tidbit
From what I've heard people like that it's slim and less time to administer (5 seconds as opposed to 10 secs). Some people have said it's very loud though.
Posted - Sun May 19, 2013 6:40 pm
Tina Tobin
mommy2seanp
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Re: Chewing gum ( peppermint, spearmint) etc
Most gum has aspartame Sent from Spring's iPhone ... Most gum has aspartame Sent from Spring's iPhone On May 19, 2013, at 3:13 AM, Rtrbot < rtrbot@... >
Posted - Sun May 19, 2013 4:46 pm
Spring Sunshine
springeedingee
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Re: Chewing gum ( peppermint, spearmint) etc
Chewing gum contains xylitol and someone mentioned the other day he problems they were having with sorbitol, another sugar alcohol. Might this be the problem?
Posted - Sun May 19, 2013 1:44 pm
Danette Hillier
danihillier75
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Re: Chewing gum ( peppermint, spearmint) etc
Are there many additives in the gum? I haven't risked any but am on such a limited diet to avoid reactions and gum has too many ingredients/cross-contaminants
Posted - Sun May 19, 2013 7:13 am
Rtrbot
anaphylaxing
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Re: Niacin
I tried taking Niaspan, but the flushes were more than I could take; I also wasn't sure if I was just flushing because of Niaspan or if it was some other Mast
Posted - Sun May 19, 2013 6:56 am
Susan O'Neal
catmafia03
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Message History

Jan Feb Mar Apr May Jun Jul Aug Sep Oct Nov Dec
2013 576 500 627 685 235
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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