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Courtesy of Manchester Centre for Genomic Medicine UK, Saint Mary’s Hospital
Adults should check their own skin regularly and report any concerns to their GP or specialist. Concerns about any unusual symptoms in children, such as neurological symptoms, or change in head circumference should be reported without delay.
As sunlight is one of the main environmental risk factors for the development of basal cell carcinomas (BCCs), extra care should be taken in the sun by using a good quality, high factor sun cream (with UVA/UVB protection) and wearing a T shirt, wide brimmed hat and sunglasses to protect the eye area when the sun is at it’s highest. Advice for children in school should be shared via the school specials education needs coordinator (SENCO)
Everyone with Gorlin Syndrome should regularly see a skin specialist (called a dermatologist) with experience of Gorlin syndrome. Screening advice will change as new knowledge arises and depends on the type of gene mistake, age of the individual and previous problems they have experienced but as a general guide:
| Surveillance | Age | To Look for |
| Echocardiogram | Baseline in Infancy | Fibromas in the heart |
| Brain MRI | Individuals with a mistake in the PTCH1 gene only if concerning neurological symptoms; change in head size or other unusual symptoms. Individuals with a mistake in SUFU gene – monthly until age of 3, then 6 monthly until age 5. | Medulloblastoma |
| Dental exam with jaw x-ray | Every 12 to 18 months from age 8 into adulthood but frequency will vary depending on result of last x-ray. | Jaw Cysts (Keratocysts) |
| Skin examination by dermatologist or surgeon | Usually annually from age 10 (but may be more frequent once first BCC observed) | Basal Cell Carcinomas |
| Ovarian ultrasound | In females by age of 18 | Fibromas in the Ovaries |