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My Story of Legge-Calve-Perthes (short version)

Updated: Apr 15, 2021

I was diagnosed in the fall of 1994 at the age of 8 3/4s with Legg Perthes Disease, a degenerative hip bone disorder affecting 1 in 20,000 (estimates are hard to get since it’s such a rare occurrence, some have even gone as low as 1 in 100,000) and only affecting children…mostly active boys. Here’s a brief memoir of what my experience was like after diagnosis.

Riding back home to our small northern Indiana town after seeing a specialist at Riley’s hospital in the big city of Indianapolis is when my recovery started. The doctor was looking for kids younger than 9 years of age with a well intact hip, still mostly round, and the children would have to be very disciplined to not put weight on the affected leg and to do their exercise 3 times a day every day. The alternative to the experimental group was a full hip replacement. Should the treatment not be successful, a hip replacement would happen anyway. So my journey began! Everyday was crutches and exercise. Every few months was an x-ray to check for good or bad news. A very active 8 year old boy’s physical world turned into a cerebral existence over night. I was fortunate to discover a strong love for reading. The great tales of far away adventures such as Moby Dick, Robinson Crusoe, Treasure Island, Adventures of Huckleberry Finn and many more classics, took me to places that my body couldn’t go. Reading was a huge part of my mental survival.

After a years time and another trip to Rileys children’s hospital, I crutched my way in to the doctor’s office to find out what my fate would be. After an X-ray and a few tests, the doctor declared his treatment was a success. He said for me to leave the crutches and walk down the hall. For the first time in over a year, this now 9 3/4s boy took his first steps and nearly fell right on his face. With a strong limp and in newborn baby deer fashion, pending a complete building collapse, there wasn’t anything that was going to stop this child from reaching the end of that hallway.

I’m a lucky one. Despite advances in treatment for Legg Perthes, children are in wheel chairs and have full leg braces to keep their hip stable. Children can be in braces for up to 3 years, have to have multiple surgeries, or worst case, a complete hip replacement.

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