- What is connective tissue.
- How EDS differs from auto-immune connective tissue diseases (like SLE).
- The heterogeneous and multisystemic presentation of EDS.
- How EDS-HT is more than just hypermobility.
- The controversies and lack of awareness in medical community about EDS.
An important reminder for everyone (excerpt):
NO TWO ZEBRAS HAVE
THE SAME STRIPES
Heterogeneity of EDS — and heterogeneity of people in general —
ultimately leads to:
• a broad spectrum of clinical presentations
• widely variable disease progressions
• treatments varying in efficacy from person to person
“Penetrance is believed to be 100%, although expressivity is extremely
variable, and careful examination may be required to demonstrate typical
features, especially in adult men who have never experienced a major
joint complication or significant pain.” — Levy HP. Ehlers-Danlos syndrome,
hypermobility type. In: Pagon RA, Bird TD, Dolan CR, Stephens K, Adam MP, editors. GeneReviews.
Seattle, Wash, USA: University of Washington; 2010.
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