In the past is was common for families to remain undiagnosed for several generations despite having been seen by doctors from a variety of disciplines.
Gorlin Syndrome is diagnosed in individuals with two major diagnostic criteria and one minor diagnostic criterion or one major and three minor diagnostic criteria.
Treatment is best provided by specialists with experience of the condition and should include surgical excision of keratocysts (jaw cysts), early treatment of BCCs to ensure their complete eradication and to preserve normal tissue to prevent disfigurement, preservation of ovarian tissue whenever ovarian fibromas require surgical treatment.
Originally produced by Professor P. A. Farndon, Clinical Geneticist, Jim Costello (deceased) and Margaret Costello. We are reliant on a team of medical advisors for the clinical content of the website. We are grateful for their continuing support.
Gorlin Syndrome Group is Registered Charity in the UK - No 1096361