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Gorlin Syndrome Group

Recent Diagnosis

My 22 yr old son has just been diagnosed as having Gorlins. He had jaw cysts and around 10 teeth removed when he was about 12 but was never tested for this .However just towards end of last yr he developed more cysts and had drain put in to drain the biggest 1 before getting more teeth removed .It was this that eventually urged the doctor to test for Gorlins and the fact that he has a large head and has hydrocephalus but was never connected before now.

I would be grateful if people could give me more info on what to expect and reassure me .

Many thanks Lorraine

4 Replies


I to had 9 keratocystic between the age of 13 to 17 and same as your son lost most of my teeth in the process, eventually got fed up with having teeth added to my dental plates decided I was better off having all the remaining teeth out and have full set of dentures which I have never regretted.I have not had any cysts since then. But people others can can continue to middle age. Gorlins is a life time affliction, for me so far 60yrs!. At this point may I say that I have led a full active life. Having to deal with rodent ulcers as they have occurred and attended to as decided necessary..

I also have four members of my extended family afflicted with this condition.

It is good you have made contact with a support group which is essential to help you to have good support around you and your family. Establish a network of help i.e First obtain a referral to a Dermatologist, and Plastic Surgeon. A Genetics clinic referral to the nearest one to you where you will be able to receive all the support, testing and advice to deal with and cope with all situations you and your son. and family

How do I cope ? It as become part of me and part of my life and there is nothing I can do to change it, It is an inherited family genetic condition and I am not alone ( at first I thought I was)but there are many throughout the world.

I was a long time before I knew I had the condition called Gorlins!! since then have I obtained most of my present day information from the internet,and Gorlins Syndrome Support groups. My advantage, I was a nurse.

There is more I could say but this time but I will not, only to emphaise the importance of setting up your clinical support. You seem to be a caring loving family. Do not worry, have peace within, then you can cope with all things. I am a a christian. I have contact with a few people who have Gorlins via e-mail, if you wish the same I would look forward to that.

I hope this as helped to a degree and encouraged you that you are not alone.



Lorraine and David, thanks for your posts. David rightly identifies the importance of clinical support, this includes regular surveillance for complications associated to the condition. Annual screening for jaw cysts and of the skin is recommended by a healthcare professional experienced in treating Gorlin Syndrome. Early treatment of jaw cysts and for the removal of basal cell carcinomas is essential to ensure effective management of the condtion. Hope this helps.


i have hydrocephalus and gorlin syndrome .. my mother is rather good on the subject after 15 years of it ... i did some research myself and gorlins can often be the cause for hydrocephalus.



Hydrocephalus is one of many symptoms associated to Gorlin Syndrome. Visit gorlingroup.org for further updated information of the many features.