Collectively, among all my relatives who have CED, live expectancy seems to be about average. The individuals who died at a younger age had afflictions unrelated to CED.
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 se...
Mi condición fue notoria desde los 3 años de edad pero recien a los 24 años me la diagnosticaron. Antes de esa edad no se sabía que enfermedad yo tenia.
Este es el blog donde cuento más sobre mi experiencia como portadora de esta enfermedad
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I am currently 15 years old and have had Camurati Englemanns Disease all of my life. Luckily we found a very good doctor when I was young so it was a quick diognosis. I have never contacted someone with the same disease I guess this is because it is ...
Hi my name is McCauli Alakayak I was born with a rare bone disease in 1999 and I wasnt diagnosed until 2004 by a Dr in Anchorage, Alaska my rare bone disease is called Camurati-Engelmann.
If you want to know more about me please message me Faceboo...