Life with Ollier's

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When I was born, my legs were kind of bent out of shape, so at 6 months old both legs were put in casts for 8 weeks. My parents thought it was over. When I began to walk my Dad noticed something was wrong. It took some time, but I was finally diagnosed in 1965 with multiple enchondromatosis, both lower leg extremities, right distal femur, right foot toes, and right hand. Very little information was available on the disease and the doctor we chose, Dr Denis Desjardins, became my own God. I thought the world of him...he traveled to Russia and Switzerland to find answers. He came back with a plan, one that may not work, but it was what he felt was best at the time. He was right, he saved my legs, and we learned more about the disease. He told my parents that all was on a trial basis, he would give it his all, and surgery number one was set, I was four and a half years old. Every year I had surgery, bone graphing, replacing it with bones from the bone bank. Placing me in a body cast for 6-8 weeks, and hoping for the best. I am now 55 years old, I finally found others with the disease, and I now support families dealing with this rare bone disease. I have had 48 surgeries to date, I have broken several bones throughout my body, have broken the same bones over and over, and recently fractured my right leg patella, very painful. My story is very long, as my life has been a battle. My family struggled with the fact I have a rare disease. Things between one of my brothers and I were not good, and unfortunately led to me being the black sheep of the family. This is something that has affected my life in many ways, and it is something that I want to ensure is not repeated with the families I support. Should you want more information, or you are looking for support, please go to my Facebook groups: Multiple Enchondromatosis; Finding Ollier's and/or Raresies Rule. The website is raresiesrule.ca. Thank you, and I look forward to knowing Raresies! Keep Smiling xo