100,000 Genomes Project: I have just... - NHS England: A Ca...

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100,000 Genomes Project

Clericus profile image
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I have just joined this project for analysis of FH. They are looking for more volunteers from people with rare diseases particularly if they may be genetic. If interested google the project for more information or ask your GP.

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Clericus
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SAMBS profile image
SAMBS

Clericus - is CMT regarded as a rare disease? My whole health has gone pearshaped with several different diagnoses over last few years thAt include 3 Autoimmune and have have been lucky to survive two big haemorrhages, Brain in 2013 and May 2017 Stomach. My doctor, who will not address the cmt issue, just says it's RA in my hands (despite I've finger joint deformity for many years - says it's my age! However the joints point up or down they don't swell side sideways. Taking everything into account i feel-think like it's more probable I have HIV or AIDS. I've never taken drugs, the only needles used on me have been by nurses for blood tests! - 1 partner only my husband) for 50 yrs though we are now separated.

My r feet deformity seemed to occur in early teens or younger, well I was 14 when had 1st foot operation and never gave much thought to shape or height of bones. I was always double jointed in my hands and could bend fingers backwards quite easily as a kid. I'm just 70 now. I certainly have inherited some of my current health issues from my deceased dad.

Clericus profile image
Clericus in reply to SAMBS

I am not a medical professional so can only say it's best to talk to your GP

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