Name : Dave Jennings
E-mail : email@example.com
Adult: 44 years old
Location: Norco, CA
Area(s) affected: Right leg, all bones from knee down to ankle
My name is Dave Jennings. I was diagnosed with Melorheostosis back in June of 1993. Joseph M. Mirra, M.D., Pathologist in Chief, Director of Orthopedic Pathology UCLA, diagnosed my condition. Doctors believe it might have been caused by a trauma; I was hit by a car when I was 10 years old. I am married and have one son who just turned 21 and so far he does not show any signs of this disease.
There was not any information available at the time I was diagnosed. The Medline check came up with only 3 other persons known to have had this disease in the entire world. NORD (National Organization for Rare Diseases and Disorders) were most helpful in providing detailed information about the disease, since our doctors had never heard of it before. The outcome was do all we can to ward off pain, discomfort and complications, and try experimental procedures (reaming the bone marrow, inserting a Spinal Cord Stimulation Unit, physical therapy, diet, herbs/vitamins), but ultimately loose the limb. However, recent notes have been that removing the limb may not be an answer since they do know the disease can affect any bone in the body, and at this point at least it is centered in this one spot, the right leg, below the knee. Since 1993, I have had 4 surgeries that they have to go in and remove and test the growths that cluster behind the knee- they are always benign, and about the size of a walnut. I've had to do this because I cannot bend my leg. It is time again to have it done but I am not willing to go through it, each surgery, and as I get older it is harder and harder, plus with all the scar tissue from previous surgeries, it makes it more difficult for the surgeon. I would never have the Reaming of the Bone Marrow Surgery again, and I am trying to have the Spinal Cord Stimulation Unit removed as it causes migraines and other discomforts. I did all this knowing it was experimental and in hopes it will help, but it has not. I have been through Pain Management at UCI Medical Center in Orange County and manage with pain medication. I am “lopsided” and walk with the help of a cane. I have been checking into a scooter to help get around better.
My belief in God and with His strength and hope has gotten me and my family by each day.
Thank you for your organization, I thought I was the only one who suffered from this.
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