Gorlin Syndrome Group | HealthUnlocked

In the survey we carried out in July, we found that although most people with Gorlin Syndrome use sun screen and wear a hat, not everybody did. We’d like to...

Hi. First time poster,long time GG patient. Have tried unsuccessfully to get life insurance to even consider me. Aviva will but won't cover me for anything...

Hi, unsure if I have Gorlin's syndrome because I haven't been tested but I've had over 40 BCC's removed and continue to produce them. My dermatologist has...

Hi. We had our some diagnosed at the beginning of January. I am grateful he has been diagnosed early but somewhat apprehensive and scared about what he will...

Hi, I have just joined. I have had Gorlings for over 30yrs first starting off with jaw cysts and then 4yrs later was told I had skin cancer. I have had a lot...

Hi there , my son is due to go in tomorrow for op to remove cysts . He has been in twice already over the years but is terrified tomorrow as the anethetist...

hello to you all again IT has been a while but sine our last post I am pleased to say my now 15 year old has had NO gorlin related health problems BUT last...

Novartis announce European Commission approval of Odomzo (formerly LDE225) for treatment of adults with locally invasive BCCs. For further information visit...

Hi i am just looking for anything on cardiac fibromas , my 14 year old daughter has had one since 1 year old when she went into sudden heart failure due too VT...

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...

I am 67 years old and was diagnosed with skin cancer in 1972.Ever since then i have had about 50 lesions,they have all been positive BCC,s.My last session...

My daughter had jaw cysts removed in July her jaw then dislocated in December despite wiring the jaw surgery several times hasn't worked she has had Botox in...

Gorlin Syndrome Group has set up a number of social media platforms, including HealthUnlocked, Facebook and Macmillan to provide general information about what...

daughter had cracky boy ish voice for nearly 1 month all tests for throat infections coming back aok???

Can I get financial help from ant charties. I am applying to Macmillon but if on medication for life this will not cover costs.

I have gorlin syndrome, but in the last 2 yrs I have had terrible stomach pain. It is terrible. It start from my belly botton and works up into my ribs on my...

Hiya my son and myself have being suffering with constipation we both have gorlin syndrome, my baby neice is suffering with constipation too but she has not...

awaiting more surgery at present just find it hard as I have no one to talk to who is going through what I am gem x

I've had Gorlin's diagnosed for 11 years but BCCs for 20 years. I've just joined this group because of the following problem: I used to be able to have a...

The results of the Gorlin Syndrome survey will be published early to mid July 2013. Currently the data is being finalised but I can confirm that there has...

Hi, I am a Gorlins sufferer. Recently my BCCs are appearing more frequently and are growing at a faster rate. I am concerned that this might indicate a...

My 16 years old daugther was diagnosed (Gorlin Syndrome) a few weeks ago and already have 4 BCCs. We heard that there are alternative ways to remove the BCCs...

My husband started on Erivedge about 2 years ago. Great results in no BCC surgeries for 2 years, all skin cancers gone. But recently started developing...

Hi. My son (now 12) was diagnosed with Gorlin Syndrome 3 years ago and has been having Jaw cysts regularly removed ever since. So far, no-one has mentioned...

Hiya all! Im obviously new to this site, nevertheless Im happy to see someone has created such a site for those of us who have this syndrome. So with that...

There is still time to participate in the on-line survey but hurry closing date is 3rd May 2013. Read on for more information. The Gorlin Syndrome Group UK,...

We have just found out that my 10 yr old daughter has Gorlin. She had 4 cyst and 9 teeth removed 4-6-13 & part of her lower jaw. She has recovered very fast....

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...

My brother has been taking this pill for 10 months and has had good results... We are looking for other opinions on the topic. Thanks!