New hips for Ben
I was diagnosed with CMT when I was six years old (1986). I had always been clumsy when I was young but we didn't know anything was wrong. I was having bad pains in my legs and I went to a pediatric orthopedist. He discovered my abnormal hip joint and suspected a neuromuscular disease. Three years ago, the doctors decided that I also have a connective tissue disorder called Ehlers-Danlos.

After I was diagnosed, I had many surgeries on my hips to help correct the tendency for them to dislocate. I spent a few summers in body casts and I never want to do that again. All of these operations were unsuccessful and the doctors at the Shriners Hospital for Crippled Children in Houston, Texas, decided that the best thing to do is hip replacements. They can only do one hip at a time and that's where I am now.

In July of this past summer, I had my first total hip replacement on my right hip. I was unable to stand on this side for two months. I was happy to get back to school again on September 27th. I am a freshman at Sterling High School in Baytown, Texas, and I am involved in the orchestra program there. I have been playing violin for three years. I will have my left side done November 17th.

Because of arthritis in my joints and muscle weakness, I take a wheelchair to school and use it for any kind of long distance I might go. Being in a wheelchair doesn't stop me, though. I like going outside and playing basketball and football in my chair, reading, listening to and playing music, and being with friends and family.

I'm anxious to get my next operation done with so I can be moving around better. My new right hip is a big improvement over the old one and is without pain most of the time. It's been a long haul but I'll make it.

The newsletter helps me, my mother and brother a lot, and I thank you for all the hard work and good information you put into it.
Ben Brown, Texas, U.S.A.

From Ben's mother:
Dear Linda:
Over the past seven years, Ben has had five hip operations and has spent a total of 24 weeks in body casts all in hot Texas summers.
I was the main caregiver while my husband was at work, and since I, too, have CMT, it has been quite tiring.
We feel this last surgery, however, will be successful. It will eliminate the arthritic pain which has been almost constant in the past three years and should enable Ben to walk for short distances. The only drawback is that because of his young age he will most likely have to have the hardware replaced two or three more times in his lifetime. A hip replacement only lasts 15 to 20 years and is less each time one is replaced. Because of the rapid deterioration of Ben's joint it was our only real option.
Carol A. Brown

Editor's note: The above appeared in December 1993 CMT Newsletter. In October, 1994 we received this update from Ben's mother, Carol Brown.

"I would like to give you an update on Benjamin. He was 15 last April and is a sophomore in high school. He had total joint replacement last year of both hips -- July '93 and Nov. '93. He's able to walk at school this year, and although he still has some pain and is taking Indocin (anti-inflammatory), he has not used the wheelchair since May!"