Name: Nicole Bentley   [Update from: Nicole Andrus]

E-mail :  

Adult33 years old

City, State:  New Berlin, WI

Areas of body affected: Right arm and hand

Personal History:

Diagnosed at age five in Milwaukee.  Have been to Johns Hopkins and Mayo Clinics.  I had surgery on my right hand at age 16 at the Mayo Clinic to improve mobility. The surgery was a failure due to the consistency of the bone. I am currently having quite a bit of pain and swelling in my right wrist. Have not seen anyone about this disease since 1986 and am struggling to decide where to go for treatment for my wrist. Most doctors are not aware of this disease and can't help.

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