Story about Camurati-Engelmann disease .

A Camurati-Engelmann disease story

Jan 28, 2016


When I was a young child I sufferers from extreme leg pain and shoulder pain . They thought I had arthritis it wasn't untill my second child was 3 we discovered this disease she too has extreme leg, arm , and shoulder pain she also has a extremely sensitive scalp. We had all kinds of scans and blood work done .Her scans showed she had Engelmans but the one gene that says you definitely have she tested negative for. The older she has gotten the less the pain has been besides the weather sometimes effects her. We are now going through tests with my one year old son who twice already stopped pulling himself up and not tolerating weight on his legs . He had xrays of his legs back in September that showed everything was normal it was until December when we had them again and they found extra bone growth in his femurs. So here we are 5 years later and will be going through many tests again. The genetic Doctor did look at the xrays and does think he has the same thing. He seems to suffer alot worse than the two of us has. I'm not sure if it's worse in men than women. He is now 15 months and is still not walking . I know he will get there eventually he does take steps holding on to things but is very stiff.

Know someone who should read this story? Share it

0 comments

Login or register to leave a comment


Couple and Camurati-Engelmann disease

Is it easy to find a partner and/or maintain relationship when you hav...

Natural treatment of Camurati-Engelmann disease

Is there any natural treatment for Camurati-Engelmann disease?

Camurati-Engelmann disease diet

Camurati-Engelmann disease diet. Is there a diet which improves the qu...

Camurati-Engelmann disease life expectancy

What is the life expectancy of someone with Camurati-Engelmann disease...

Camurati-Engelmann disease causes

Which are the causes of Camurati-Engelmann disease?

Living with Camurati-Engelmann disease

Living with Camurati-Engelmann disease. How to live with Camurati-Enge...

Is Camurati-Engelmann disease contagious?

Is Camurati-Engelmann disease contagious?

ICD9 and ICD10 codes of Camurati-Engelmann disease

ICD10 code of Camurati-Engelmann disease and ICD9 code