Name : Heidi
Adult: 26 years old
Areas of body affected: Left wrist, arm and elbow; some evidence in shoulder
Personal history:
Hi, My name is Heidi. I am a 26 year old female with melorheostosis is my left wrist, arm and elbow. I was diagnosed at 13 when I broke my pinky finger playing basketball. X-rays showed extremely abnormal bone growths.
After thirteen years and two surgeries later, my bumpy arm still appears the same and the pain is still there. It doesn't bother me to the extent of severe daily pain but I experience discomfort and it bothers me cosmetically.
I have learned to live with this bone disease. The surgeries helped smooth out the appearance of my arm and wrist bumps but they have grown back. My last set of x-rays showed I have some evidence of melorheostosis in my left shoulder but it does not seem to affect me.
I will continue to hope for a cure to this rare bone disease and have enjoyed learning I am not alone in my struggles.