Name : Linda Massengale Hembree

E-mail : 

Adult:  49 years old

City, State: Florence, Ky

Areas of body affected: right hip, entire right leg and foot

Personal History:

At age 17, I was diagnosed with melorheostosis after suffering with leg pain my entire life.  I was told I had growing pains and arthritis.  At 17 I was finally x-rayed. My parents were told of the condition and that little or nothing was known about it.  At age 21, a fairly famous Cincinnati doctor wanted to operate to remove the large calcium deposit on the latter portion of my hip. When in surgery he found that the deposit was attached to my spine, at that time he scrapped the femur to hopefully relieve some of the vascular pressure and closed me up.  I was told that 7 drill bits were broken in the process of drilling burr holes in my femur.

In the past 27 years since my only surgery the only treatment I have received are anti-inflammatory medications (Vioxx at present time) which I feel do help some. My main source is the right hip which is so blocked with the calcium that I cannot tie my own shoe or put on socks or stockings. The way I have limped for so many years has really affected my feet, knee and ankles.  The pain is sometimes almost unbearable.  I was shocked tonight when looking for an orthopedic doctor hopefully with some new knowledge, that I found this website.  My entire life I have wished to find someone else with this strange disease, to compare notes and maybe find help.  I would appreciate talking with someone like me, someone who understands. Sincerely looking for help.  Thanks.

Comments/Suggestions:  I am grateful to find out there are other people with this rare disease. Hopefully someone somewhere will find help for us. I wish a physician would join the discussion.