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Gorlin Syndrome Group

Supporting patients, their families and carers
 
Registered Charity No: 1096361
Supporting patients, their families, friends and carers affected by Gorlin Syndrome
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Treatment Priorities
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Effective Management
To ensure effective management of Gorlin Syndrome it is vital that patients are treated in the early stages and for this reason regular surveillance is recommended.
 
Basal Cell Carcinomas 
 
90% of patients with Gorlin Syndrome will develop basal cell carcinomas at some stage in their life.
 
To ensure effective management of the condition it is vital that patients are treated in the early stages and for this reason regular surveillance is recommended to ensure:
  • Prompt treatment for best cosmetic effects
  • Eradication of aggressive BCCs
  • Particular attention to individual lesions occurring around the eyes, nose, mouth and ears
  • Preservation of normal tissue to prevent disfigurement
It is highly recommended that patients with Gorlin Syndrome are seen on a regular basis by an experienced Dermatologist.
 
Jaw Cysts
 
13% of people with Gorlin Syndrome develop a jaw cysts before the age of 10 and 51% by the age of 20. The majority occur after the seventh year.  As with the skin, it is recommended that patients are treated in the early stages. Regular screening is essential for early detection and treatment.
 
Jaw cysts require surgical removal and it is important that patients seek prompt treatment if complications and extensive surgery is to be avoided. 
 
 
Primary Care Trusts hold lists of clinicians who are specialised in particular areas, for example they can usually advise on a local or regional Dermatologist.
 
 
 
 

 
 
 
 


 
 
 
 
Written and produced by Professor P A Farndon, Clinical Geneticist at the National Genetics Education and Development Centre UK, Jim Costello (deceased) & Margaret Costello, unless otherwise stated.