Gorlin Syndrome Group

How important is it that I find out if I have gorlins??

My mother nearly 60 has been diagnosed after multiple bccs, jaw cysts and melanoma. I am 33 feel well with 2 small boys. After 9 months waiting my genetic appointment had come thru. I'm quite tempted to not attend. Do I need to know? And how will it's implications affect me (insurance) etc??? Would it be ok to just look after myself and address any problems that arrive rather than being "labelled". Any advice much appreciated. I have 2 weeks to decide if I want or need to know.

6 Replies

I would not worried about a label

Gorlin is not well know and so needs explaining to most doctors ...


if you check out other conditions linked to the syndrome

I think you will find it is worth checking especially in babies ..

I think this for your kid,s and there future family ?

even if you get checked to see if you have it before getting your kids checked ?

as for impact on life

I do not have it but my daughter does and there is no big impact

just lost of operations and check ups and life is VERY normal

not sure about insurances ? but if not told and they find your mum has it it may void the insurance ???

The choice is yours

But personally I am pleased I pushed for genetic tests with my daughter as we are able to take precautions and watch for signs of BCC's and Jaw cysts and are fast tracked for treatments which is good as jaw cysts grow very very fast ..her last opp she had 5 large ones removed one taking over the hole of the right sinus grew within 3 weeks from nothing ..so swift action was great ,,

I do hope this helps

and I do hope IT has missed you and your kids ???

as it is better not to have any health problem

Please do let me know how things go and if you do decide to get tested

Good luck


from England


Thank you Duck it's great to have advice from someone in a similar situation. Yikes!! I had no idea that the cysts could grow so fast :( I was thinking I'd have plenty of time to seek medical attention if one popped up. However, I wouldn't as I am struggling to even find an nhs dentist for myself an children at the moment. In truth I am a bit scared as I have lots of gorlin symptoms.I have bifid ribs other skeletal problems and am very "dotty" on the skin :(( I've spent my life a "sunworshipper" and lived on sunbeds in my teens.

Think you've confirmed I can't ignore this especially for the sake of my kids 4 and 8.


Thank you fiona :) will keep you posted.


Contact Margaret

she head of UK gorlin syndrome group

you can find on the internet

hear and face book has a goril group too

SHE is amazing and her phone number is on the gorlin group uk web sight

PLease do call her she will help

I take it you live in the UK

I am in the north east if that would help

LIFE dose not alter

there is not tag..

just lots of hospital visits and so far with all the jaw cysts 6 in 1 year all big ones

operated on and back to school the next day ..

we have not had BCC;s yet but do now know to watch for them ...

again hope this helps a little

take care



Thanks Fiona, I will do. Can I ask how old your daughter is??? She does so well to go straight back to school. My mums face was horrendous after she had one removed. too live in the north east I am just outside of York and this is where I am going for testing. My mum has been going to Leeds.


Hi Janeyj

I've noted your comments and Fiona's response. Fiona has offered extremely good advice to you and I can only endorse her comments and recommendations.

The decision whether to attend the Genetic appointment or not can only be your decision but I would recommend that you do. Diagnosis is vital for surveillance for complications such as basal cell carcinomas (BCCs/skin cancer) and jaw cysts, and for giving genetic information. It is also important that patients are treated in the early stages to avoid extensive surgery.

For the sake of your children don't ignore. This condition can be managed effectively with regular check ups and timely treatment.

Keep in touch. I wish you all the best.



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