Name : Carolyn Parker

E-mail :

Adult:  55 years old

City, State:  Baird, Texas

Area of body affected:  left leg

Personal History:

I am a 55 year old woman from Baird, Texas who was diagnosed with melorheostosis, ostepoikilosis, and osteopathiastriata of the left leg in 1976 at M.D. Anderson Cancer Hospital in Houston, Texas.  The pain was so severe that I had to walk with crutches and I was hospitalized several times.  The doctors were treating me for thrombophlebitis.  I applied for disability in 1976 but was denied because it was not severe enough (they said).  Since that time I have continued to work although the pain has gotten much worse over the years.  In March, 2001, Texas Tech Research Center in Lubbock, Texas started research on our whole family on the osteopoikilosis, since there are quite a few of us that are carriers.

Also, Dr. Struck in Berlin is starting research on our genes, which should prove to be interesting.  I, too have had doctors turn me away because they do not know what this is and are not interested in helping me with the pain. The bone diseases could possibly be in my back also.  Right now the doctors are asking me to take Fosamx--has anyone taken this with any luck?  It is so good to find a site where I can talk to someone about this.  All these years I have not known anything about these diseases and there has been no one that will listen or try to help.

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