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This one is about: The Freeman-Sheldon Parent Support Group

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I want to introduce myself to the group. My name is Joyce Dolcourt and I run the Freeman-Sheldon Parent Support Group. My interest in Freeman-Sheldon syndrome (also known as Whistling Face syndrome and Craniocarpotarsal dysplasia) came about with the birth of my second child, Cameron in 1981. When he was born, we were told that the syndrome was very rare and occurs in one in a million births. He was born with heavy lidded eyes, low set ears, an unusually long distance between his short nose and mouth, a high arched palate, a tiny mouth that appeared pursed as if whistling (it opened the size of a nickel), mild dimpling on his chin, full cheeks, mild hearing loss, hip contractures, and club feet. We were naturally concerned about his future and sought information. Fortunately for us, we met a woman who had just moved to Salt Lake City. She was a physical therapist and remembered that her babysitter in Illinois had a sister with Whistling Face syndrome. We were able to make contact with the family. Our knowledge increased and our support group began (1982).

Freeman-Sheldon syndrome is a muscular disorder. In addition to the facial involvement, many of our members have limited neck rotation, and contractures of the fingers. Scoliosis develops with time. Feeding problems are very common. We have also seen an association with inhaled anesthesia and Malignant Hyperthermia in some individuals with Freeman-Sheldon syndrome. Most of our members have had numerous reconstructive surgical procedures to correct the facial and orthopedic problems that occur with Freeman-Sheldon syndrome. Physical therapy, speech therapy and occupational therapy all play a role in improving/maintaining function. Intelligence is usually normal. We do, however, have some members with mental retardation without a known cause.

The Freeman-Sheldon Parent Support Group is international. We have grown slowly through the years but have now reached 100 member families. We have seen significant growth in the past year with contact through the Internet.

Our web address is:

Our members network by phone, through personal letters, through our newsletter and now for a small number through e-mail.

We have been actively involved in research to map the gene for Freeman-Sheldon syndrome. The diagnosis is currently based on the symptoms manifested by the affected individual and the experience of their physician.
Because the syndrome is rare, most physicians are not familiar with it and I'm afraid many of our members have been misdiagnosed. Hopefully with time (lots of time) we will have a biochemical test to diagnose Freeman-Sheldon

Joyce Dolcourt
(801) 364-7060

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