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Old 10-27-2006, 06:06 AM
leaf leaf is offline
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Join Date: Oct 2006
Location: Bristol UK
Posts: 45
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I nearly fell off my chair when I read your post!

I don't know about any relationship between ED and HNPP, though I have heard of a few others with very lax joints, but no definite DX of ED. I have always been a bit on the 'loose' side, but not to that extent. However, with my fathers history, he died from aortic aneurysm rupture at age 37, there is a query over Marfans syndrome, which I think is a similar problem to ED.
I had pretty much dismissed that as being a problem for me, until they measured my leg and arm length compared to my height, and I'm well above the normal range. Armspan 6-6, height 5-11. My legs are a bit on the long side but not as excessive as my arms. I am awaiting a full scan of my aorta with measurement of the Aortic root. HoHum... fingers crossed ...

Oh almost forgot... AFO - Ankle-foot Orthosis - I have one for my right leg, because of the foot drop. I have a Toe-Off, spiral type, made from hard composite material. Light and very effective, but chews up shoes for breakfast. Buying suitable footwear to go with it isn't easy.
http://www.camphealthcare.com/orthopedics_toeoff.html

Some people over in the UK are trying the SAFO, they are expensive though.
http://www.safo.eu.com/en/index.html

Jon
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HNPP - Hereditary Neuropathy with liabilty to pressure palsy.
HNPP UK Links and Info
Hnpp Info page : CMTA : CMT UK
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