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Safe in the Sun Survey

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...

In the survey we carried out in July, we found that although most people with Go...

Hidden

•6 years ago

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Life insurance For Gorlin Goltz patients

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. First time poster,long time GG patient. Have tried unsuccessfully to get lif...

Scotoz

•6 years ago

1 Reply

Gorlins and Erivedge

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, unsure if I have Gorlin's syndrome because I haven't been tested but I've ha...

wsjkcj1

•7 years ago

15 Replies

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4 year old sone

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. We had our some diagnosed at the beginning of January. I am grateful he has...

Heathrow

•8 years ago

1 Reply

Just to say Hello

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, I have just joined. I have had Gorlings for over 30yrs first starting off wi...

Coconuts3

•8 years ago

2 Replies

Op tomorrow

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...

Hi there , my son is due to go in tomorrow for op to remove cysts . He has been ...

lozzap50

•8 years ago

1 Reply

MY DAUGHTER HAS A LUMP

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...

hello to you all again IT has been a while but sine our last post I am pleased t...

duck

•9 years ago

4 Replies

Novartis announce EU approval of Odmonzo (formerly LDE225)

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

Novartis announce European Commission approval of Odomzo (formerly LDE225) for t...

Hidden

•9 years ago

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Cardiac fibroma

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...

Hi i am just looking for anything on cardiac fibromas , my 14 year old daughter ...

kelly0751

•9 years ago

4 Replies

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...

Hello everyone, I have just rejoined the group after a 14 year gap. As a 30 year...

Markijohno

•10 years ago

3 Replies

Gorlin,s, how long to diagnose ?

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...

I am 67 years old and was diagnosed with skin cancer in 1972.Ever since then i h...

cooneyzola

•10 years ago

10 Replies

My 14 year old daughter has been diagnosed with gorlin syndrome this wk she dislocated her jaw 6 months ago anyone else experienced this

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...

My daughter had jaw cysts removed in July her jaw then dislocated in December de...

Kerrbridge

•10 years ago

1 Reply

Moderation of Social Media Wesbites

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

Gorlin Syndrome Group has set up a number of social media platforms, including H...

Hidden

•11 years ago

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any one know if a cracky voise may be due to gorlins in any way ??

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

daughter had cracky boy ish voice for nearly 1 month all tests for throat infect...

duck

•11 years ago

9 Replies

I am now trying vismogeib. But have to travel from Leeds to Manchester for treatment. I amnot on benefits but on a modest wage.

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

Can I get financial help from ant charties. I am applying to Macmillon but if on...

sharon65

•11 years ago

2 Replies

Stomach trouble

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...

I have gorlin syndrome, but in the last 2 yrs I have had terrible stomach pain. ...

charlie03

•11 years ago

1 Reply

Problems with stomach trouble and constipation with gorlin syndrome

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...

Hiya my son and myself have being suffering with constipation we both have gorli...

charlie03

•11 years ago

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hi my name is gemma I have had gorlins since I was 13 I had my first bcc at 19. I am 29 now and the bccs are coming faster than ever

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

awaiting more surgery at present just find it hard as I have no one to talk to w...

gemstar1984

•11 years ago

3 Replies

Anybody got any tips for dealing with the emotional roller coaster of surgery?

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...

I've had Gorlin's diagnosed for 11 years but BCCs for 20 years. I've just joined...

Hebden_potter

•11 years ago

7 Replies

Gorlin Syndrome Group Survey findings to be published shortly

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...

The results of the Gorlin Syndrome survey will be published early to mid July 20...

Hidden

•11 years ago

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Gorlins throughout life

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...

Hi, I am a Gorlins sufferer. Recently my BCCs are appearing more frequently a...

mccleans

•11 years ago

12 Replies

Alternative ways to remove BCCs

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 16 years old daugther was diagnosed (Gorlin Syndrome) a few weeks ago and alr...

eshubi

•11 years ago

4 Replies

Has anyone experienced an increase in cyst formation with Erivedge?

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...

My husband started on Erivedge about 2 years ago. Great results in no BCC surg...

MamaJenny

•12 years ago

4 Replies

How soon should my son see a dermatologist?

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...

Hi. My son (now 12) was diagnosed with Gorlin Syndrome 3 years ago and has been ...

MUM25

•12 years ago

7 Replies

Jaw Cyst Solutions

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...

Hiya all! Im obviously new to this site, nevertheless Im happy to see someone...

PTCH1ARLIE

•12 years ago

2 Replies

Gorlin Syndrome Survey - closing date 3rd May 2013

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,...

There is still time to participate in the on-line survey but hurry closing date ...

Hidden

•12 years ago

2 Replies

10 yr old Daughter with Gorlin

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....

We have just found out that my 10 yr old daughter has Gorlin. She had 4 cyst and...

roberson

•12 years ago

2 Replies

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...

My 22 yr old son has just been diagnosed as having Gorlins. He had jaw cysts and...

lozza1903

•12 years ago

4 Replies

Does anyone have any experience with the Erivedge pill by Genitech?

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!

My brother has been taking this pill for 10 months and has had good results... W...

ashley12

•12 years ago

3 Replies

Is there any connection between a condition called MYELOPATHY and GORLIN. Apart from spinal, and that they are both heritable?? Thank you

bigbry

•12 years ago

1 Reply

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Posts - Gorlin Syndrome Group | HealthUnlocked

Gorlin Syndrome Group

Safe in the Sun Survey

Life insurance For Gorlin Goltz patients

Gorlins and Erivedge

4 year old sone

Just to say Hello

Op tomorrow

MY DAUGHTER HAS A LUMP

Novartis announce EU approval of Odmonzo (formerly LDE225)

Cardiac fibroma

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

Gorlin,s, how long to diagnose ?

My 14 year old daughter has been diagnosed with gorlin syndrome this wk she dislocated her jaw 6 months ago anyone else experienced this

Moderation of Social Media Wesbites

any one know if a cracky voise may be due to gorlins in any way ??

I am now trying vismogeib. But have to travel from Leeds to Manchester for treatment. I amnot on benefits but on a modest wage.

Stomach trouble

Problems with stomach trouble and constipation with gorlin syndrome

hi my name is gemma I have had gorlins since I was 13 I had my first bcc at 19. I am 29 now and the bccs are coming faster than ever

Anybody got any tips for dealing with the emotional roller coaster of surgery?

Gorlin Syndrome Group Survey findings to be published shortly

Gorlins throughout life

Alternative ways to remove BCCs

Has anyone experienced an increase in cyst formation with Erivedge?

How soon should my son see a dermatologist?

Jaw Cyst Solutions

Gorlin Syndrome Survey - closing date 3rd May 2013

10 yr old Daughter with Gorlin

Recent Diagnosis

Does anyone have any experience with the Erivedge pill by Genitech?

Is there any connection between a condition called MYELOPATHY and GORLIN. Apart from spinal, and that they are both heritable?? Thank you

Search posts

Latest poll

How well do you feel your condition was managed over the last year?

Topics

Archive