Name : Rebecca Hoy

Adult:  31 years old

City, state: Meriden, CT

Email:  rebecca72@sbcglobal.net 

Areas of Body Affected:  left and right tibias and femurs, left ulna, right humerus

Personal History :  

While serving on active duty as an airman in the United States Air Force, I was diagnosed with atypical melorheostosis, a progressive bone disease that can eventually cause joint fusion. This disease has not been found to have any hereditary significance.

Before entrance into the USAF, I was an active and healthy teenager. Approximately two weeks after entering basic training, I began to have unexplained bilateral leg pain. Four years, an MRI, a bone scan, countless X-rays and a bone biopsy later, I was diagnosed with atypical melorheostosis by Dr. Norman Mindrebo. My guess is that the constant marching and running caused cellular damage to my bones and kicked my disease into gear.

I continued to see Dr. Mindrebo, the diagnosing physician, until he retired from the AF. I began seeing his successor, Dr. Kyme, in February of 1996. Dr. Kyme and I discussed treatment options. He didnít know of any, so I wrote to the Mayo Clinic for some advice. They sent me the names of three bone pathologists in the Omaha area. I went to Dr. Robert Recker, head of the Osteoporosis Center at Creighton University. I saw Dr. Recker in May of 1996. He looked at my films and decided I had Engelmanní s disease, which may be related to melorheostosis. By coincidence, Dr. Recker had finished a study on Englemannís disease. I reported this to Dr. Kyme, who requested a copy of Dr. Reckerís report from his office. Dr. Kyme does not agree with Dr. Reckerís diagnosis, as Dr. Recker had not looked at the slides from the bone biopsy performed in 1994 when he wrote his report.

My battles with the Air Force medical community over four and a half years caused me to lose confidence in the entire Air Force, and ended what was at one time a promising career. I have all but decided not to have children. This is due to the resulting extreme skeletal strain, not to mention the ever-present fear that, although melorheostosis is not hereditary, I am afraid it could be passed on to my children.

Dr. Mindrebo, my attending physician for 7 months, believes that my condition is analogous to Rheumatoid arthritis. The facts are that I was an extremely active child and teenager prior to my entrance into active military service. A mere 2 weeks after entering basic training I began to experience pain that has continued every day for the past 13 years and will continue every day for the rest of my life. Since Motrin and other OTC pain relievers do nothing for the pain I take Tylenol with Codeine two or 3 times per week. I would take it more often, but I have better things to do than lie on my couch in a drug-induced stupor, although sometimes that idea does not sound too bad.

I visited a civilian doctor and radiologist. I had what is called a long bone survey. According to the X-rays taken, my disease has progressed at a very steady rate since 1991. Dr. Kyme indicated that my condition has stabilized. In a way he is correct. My symptoms have not increased in the past few years. In another way, he is quite wrong, because the disease process has continued, and will continue for the rest of my life.

Recently I have found that running on an elliptical trainer, due to its extremely low impact, is a great way for me to exercise. Water aerobics is great for the same reason. Becoming active again has helped me deal with the pain and made me much happier. I highly recommend it.

I appreciate this website so much. I have felt so alone over the past 13 years. No one understands the pain of this disease like people that suffer from it. A huge thank you to everyone involved.

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