Name : Dave Jennings
E-mail : cimblu@yahoo.com
Adult: 44 years old
Location: Norco, CA
Area(s) affected: Right leg, all bones from knee down to ankle
Personal History:
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.