Stickler Syndrome UK
Stickler Syndrome UK (SSUK) was founded by Wendy Hughes in 1989. In October 1994 the Group held its first conference in Birmingham. More than 100 people attended from all corners of the UK as well as from the Netherlands and Eire. Dr Gunnar Stickler, who defined the condition in 1965, came over from America for the conference, and accepted the Group’s invitation to become their Life President. Stickler syndrome is a common but little recognised genetic disorder. One in 10,000 persons may be affected, although many medical professionals believe that the figure is considerably higher. Symptoms are variable and can present in different ways even with the same family. How we help: •By raising awareness of Stickler syndrome amongst medical professionals and the general public. •By emphasising the value of early diagnosis for adults and children with the condition. •By stressing in our literature, and to all professional and family contacts, that prompt treatment for retinal detachment and other eye problems associated with the condition can help to preserve vision. •By producing clear and accurate information about Stickler syndrome in print and on our website. •By organising conferences, family days and other events for affected families and for professionals who want to be informed about the condition. •By taking our leaflets and display stand to events aimed at medical professionals, and at people with a visual or hearing impairment, or with restricted mobility. •By encouraging individuals and families affected by Stickler syndrome to become members of the SSUK so that they can be updated on medical research and receive copies of all new SSUK publications. •By helping to alleviate feelings of isolation and distress in affected individuals and families throughout the UK, especially when they are undergoing medical procedures related to Stickler syndrome. •By encouraging medical and other professionals to join our mailing list so that they can receive all SSUK publications and thus be better able to advise sufferers and offer appropriate support.