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Fibrodysplasia Ossificans Progressiva or FOP is an extremely rare muscle disease that causes the muscles and connective tissues to calcify or change to bone. Many of my joints are frozen, giving me limited mobility. I basically have to stand or lie down and cannot sit. In 1994-95 the disease went into my right elbow and I switched to my left hand for doing most things such as writing or painting. I'm able to walk around the house using a cane or walker and use a wheelchair to go out of the house. My life is one of constant adapting, and I continue to face the many daily challenges. It really has helped to have a great number of interests such as painting, computing and photograghy. At times, my painting is like therapy. It helps me get through the rough times.
FOP can sometimes be a very painful disease. It has been a big help for me to have terrific support from my family and friends. My parents have been wonderful. I can't thank them enough. There is a support group for FOP called IFOPA and there are currently 200 worldwide members. I painted the monarch butterfly cover for the FOP Guidebook and have done many ink drawings for the quarterly newsletter. It has been great to be in touch with others. If you would like to learn more about FOP and the IFOPA web site, please click on : IFOPA To see the Guidebook cover and what Jack wrote for the book go to: Guidebook
FOP AND PAINTING Because of my disease, I do have some limitations with my painting. In 1994-95 my right elbow locked up so I switched to my left hand for most of my painting. Also since I cannot sit, I either stand to paint or work while in bed. When I stand I work with my left hand and when in bed I have enough side to side motion where I can paint with my right. I would say that currently I paint 75% with my left and 25% with my right hand. When I stand I do have limited reach (my left elbow bends but shoulders are frozen) and I often work on a larger painting sideways or upside down.
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