Name : Louise

E-mail :

Adult:  48 years old

City, State:  Pittsburgh, PA

Areas of body affected:  Right leg and foot

Personal history:

I was diagnosed with the disease when I was 6 years old. My mother took me to several doctors before one in Pittsburgh Pa. finally put me in Children's Hospital for a two week stay and did several tests. I started having surgery at the age of 8. My affected areas are the right leg all the way to and including my foot. I have had 10 surgeries to date for corrections. My doctor started bone growth studies at the age of 8 and finally did stop my left leg from growing to allow the right leg ample time to grow and catch up. At the time the left leg was 2 inches shorter, now the right leg is about 1/8 of an inch longer....almost perfect! Unfortunately, he could not do the same with my foot so it is 2 shoe sizes smaller than the left foot. I have had 2 toes amputated on that right foot because of the severe deformity of the toes curling under and over each other, which has helped tremendously. I am now 48 years old and still need to have another corrective surgery on my foot because of the severe contracture, but I have been putting that off because my surgeon in Pittsburgh has since retired and I have not found one that I completely trust with this situation. If anyone knows of a good surgeon in the Pittsburgh area please let me know.

Update 11/14/2007

City, State:  Steubenville, OH

Age 52

Areas affected:  Right hip, right leg, right foot, right hand
Treatments:    Corrective surgeries done at Children's Hospital in Pittsburgh PA from age 6, total of 9 surgeries.  One and 1/2 toes were amputated because of severe deformity, bone growth studies done and left leg stopped from growing at age 12.  Prior to that surgery the right leg was nearly 2 inches shorter than the left.  Today both legs are pretty close to the same length.
Medications:  Currently on a pain medication as needed.
Physician:    William Donaldson, MD
Current Status:    Doing pretty well, I do have a hard time in the winter months, the cold seems to slow me down because of pain.