Group Information- Members: 128
- Category: Support
- Founded: Jun 12, 2011
- Language: English
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Description
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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.
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Message History
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