Name : Wilbur Pfaffendorf
Adult: Age 68.
City, State: Wyoming, MN.
Email: river55092@aol.com
Areas of the body affected: Right leg, some in pelvis, and spine.
Personal history:
Disease first noticed about age eight, because the right leg looked different from left leg. By age eighteen, the deformity was very obvious, and was painful. Disease was diagnosed by a physician when the Military sent a draft notice at age eighteen. That notice exempted me from military service. The leg is narrower when looking at it from the front, and it is wide looking from the side, and curved because of the chord not growing after natural height was attained. The leg is several inches longer than the other. As the disease progressed the ankle, knee, and hip joints became arthritic, and the knee and ankle large. I have very limited mobility in the knee and ankle now. I cannot bend either joint. The hip is less affected. In 1980, I had the first of many severe arthritic like attacks, that are so terribly painful I cannot get out of bed or move from any position for one week. What sets these attacks off we do not know. Of course I have seen many doctors, and only two have even seen a case of this disease.I was at the University of MN, in the early 80's. They tried calcitonin injections, which did no good at all. No doctor has been able to treat me other than to give me pain killers in combination with flexeril to ease the pain during an attack. Sometimes the attack starts in one joint, and moves on to another. The pain is terrible, and the addition of the muscle relaxer seems to be the best way to control the pain during an attack. The only medication I take is Feldene in a 20MG dose once a day. I have taken that for many years. After that initial attack in 1980 I had to retire from work. I am not wheelchair bound, although it may come to that. Walking is difficult, and I can't reach my foot to put on stockings or wash it. I use a sock assister. No surgeries were ever attempted, other than to remove a calcium deposit over the knee cap, and just last week to surgically remove a pressure leg ulcer that refused to heal on the outside of the leg just above the ankle. The University of MN orthopedic department, several other orthopedic surgeons, and at this time Dr Leo Pena an Internal Medicine doctor at Fairview Lakes Medical Center at Wyoming MN,and Dr Jefrey Ley Orthopadic Surgeon.
Other than the Melorheostosis, I am in good health.
Comments/suggestions:
Thank you for this web site. Any information you could share with me will be very much appreciated. We know of no other person with which to communicate, and we would also appreciate it if we could be put in touch with other persons who have this strange disease.
THANK YOU AGAIN.
Wilbur Pfaffendorf