How times flies!
It's hard to believe that the group has now existed for 20 years. Set up in 1992 by my late husband Jim, assisted by Professor Peter Farndon and Professor Gareth Evans, and their staff. Five people at the first meeting - wow how we have grown! We are now in contact with patients and their families worldwide.
The group came about on the back of our experience. For 10 years Jim underwent regular and varied medical procedures for the removal of 'rodent ulcers' (we know now that they were basal cell carcinomas). Despite our concerns and questions to medical staff no diagnosis was forthcoming.
It was following the death of our youngest daughter Anna, aged 5 1/2 months, in 1981 of a cardiac fibroma that we received diagnosis. We were to later find out via Jim's medical notes that Gorlin Syndrome had been suspected in 1972 but we hadn't been party to that information.
Jim worked with medical advisors to gather as much information about the condition to ensure that it was available to all those affected by the condition. It's been an honour to be part of Jim's vision and his legacy.
Diagnosis and treatments have improved over the years but there is still work to be done if GS patients are to receive the best possible healthcare. New treatments and clinical trials are on the way and give some hope for the future and it's our intention to we keep everyone informed.
I've met so many people affected by Gorlin Syndrome and made many friends along the way, all have been an inspiration to me and at times a source of support. My thanks go to all.
Margaret
