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