Name :     Karen McDonald

E-mail :  Karen.mcdoanld3@ntlworld.com

Adult:      49 years old

Location:  Cambridge, England

Area(s) affected:  left foot/ankle

Personal History:

I broke my shin bone when I was 4yrs old, the hospital took x-rays and that was that. All through school my foot always went stiff when I tried to run but thought nothing of it, then when I was about 11 my middle toe of my left foot started to go behind my 2nd toe so I had an op to straighten it, while they were going through my notes a surgeon noticed the old x-ray from when I was 4yrs old and said from the x-rays I had Melorheostosis, which he said was very rare, but he didn’t know much about it but it may of caused my toe going under.

As time went on I noticed I couldn’t walk as far as others as my foot felt like it would swell up, then under my foot started to hollow out and I could actually put my finger in the hole under the middle of my foot. The surgeon said if I didn’t have an operation I would be in a wheelchair in 10yrs, so I had the op to pull down the tendons and I had to learn to walk again as it was difficult to put weight on it. It eased it but didn’t cure it, as time has gone on it has got so much worse, I cant walk far without it swelling up and being painful. Even if I sit I get shooting pains in my foot. I now have to drive an automatic car as it got too painful to drive a manual, and it affects my job. I am currently waiting for an MRI to see what’s happening to my foot but the surgeon didn’t seem to have a clue what Melorheostosis was and he already said he didn’t think there was anything they could do.

Can anybody tell me if they are registered as disabled with this disease?

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