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Old 10-27-2006, 06:06 AM
leaf leaf is offline
Community Member
Join Date: Oct 2006
Location: Bristol UK
Posts: 45

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.

Some people over in the UK are trying the SAFO, they are expensive though.

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