A Camurati-Engelmann disease story

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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.