Gorlin Syndrome Group

30+ years of Gorlins and i'm still here ;~)

Hello everyone, I have just rejoined the group after a 14 year gap. As a 30 year plus veteran of Gorlins I feel I'm in a very good position to offer whatever help and support I can to my fellow sufferers, particularly those newly diagnosed.

3 Replies


I andy brother not to long ago

found out we have gorlin.

Even though we been living with itour whole lives. Sense then we.had more issues.

From systs, joint pain, skin issues

it's been difficult concidering doctors don't know anything about it.


Not knowing where u live I think your best option is to contact your local health authority or the Gorlin support group directly. Here in Nottingham we have a specialist treatment centre within the Queens Medical Centre Hospital complex. I've been under the same medical team for many years, and introduced to many surgeons and nurses all the time who are learning about Gorlins thru me and my younger brother. At the moment I'm under the knife every 4-6weeks, mainly treating facial cancers, so it never ends but I know I'm getting the very best care available anywhere. Hope this helps.

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Thanks for your post. I am sure with your experience that you will be in a position to offer support to others. Have you checked out the Gorlin page on Facebook. Here is the link facebook.com/groups/1272325...

Wishing you well.


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