Medical
Professionals
If you/your child have been diagnosed with Gorlin syndrome, it is important to take care of yourself/them every day. A critical part of learning how to manage your/your child’s condition is learning all you can about Gorlin syndrome and how it may affect your/your child’s health.
Managing Gorlin syndrome centers on four areas of action: prevention, surveillance, monitoring and treatment. Not all people with Gorlin syndrome share the same set of symptoms, but management may be similar. In this guide, you will learn important prevention, surveillance (follow-up care and monitoring symptoms), and considerations for patients with Gorlin syndrome. If you/your child have questions, please seek individualized recommendations from your care team. You can also consider contacting the Gorlin Syndrome Alliance to obtain information and input.
Healthcare providers are encouraged to use the information provided here to assist in the care of individuals of all ages affected with Gorlin syndrome. There is also an extensive library of syndrome related articles available here.
Individuals of all ages affected with Gorlin syndrome are prone to develop basal cell carcinomas throughout their lives. Click HERE for more information on prevention.
The signs and symptoms of Gorlin syndrome can develop and change over time. It is important to establish a baseline for each symptom / manifestation in a person with GS. Once the baseline tests and exams are complete, follow-up care or surveillance must continue. Information on proper surveillance can be found by clicking HERE.
Gorlin syndrome is a lifelong condition. It is important to work with your/your child’s care team to monitor signs and symptoms, and how they may change over time. Click HERE for more information on monitoring of Gorlin syndrome manifestations.
Many symptoms of Gorlin syndrome generally do not require treatment. Other manifestations need close monitoring. Different signs and symptoms of Gorlin syndrome require different treatments. Click HERE for information on treatment and the type of healthcare professionals to provide the care.