Gorlin's Syndrome and hypogammglobulienemia
LF622 months ago
I'm 54yrs old, diagnosed in my teens w/Gorlin's Syndrome. Having a rare disease is very challenging, educating my specialists along the ...
4 year old sone
Heathrow3 months ago
Hi. We had our some diagnosed at the beginning of January. I am grateful he has been diagnosed early but somewhat apprehensive and scared a...
Just to say Hello
Coconuts33 months ago
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....
2 Replies1 Like
lozzap505 months ago
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...
MY DAUGHTER HAS A LUMP
ducka year ago
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 pr...
Novartis announce EU approval of Odmonzo (formerly LDE225)
GSGAdmin2 years ago
Novartis announce European Commission approval of Odomzo (formerly LDE225) for treatment of adults with locally invasive BCCs. For further i...
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kelly07512 years ago
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...
30+ years of Gorlins and i'm still here ;~)
Markijohno2 years ago
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 ...
Gorlin,s, how long to diagnose ?
cooneyzola2 years ago
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.M...
My 14 year old daughter has been diagnosed with gorlin syndrome this wk she dislocated her jaw 6 months ago anyone else experienced this
Kerrbridge3 years ago
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...
Moderation of Social Media Wesbites
GSGAdmin3 years ago
Gorlin Syndrome Group has set up a number of social media platforms, including HealthUnlocked, Facebook and Macmillan to provide general inf...
Gorlin Syndrome Group website updated today.
To access information visit gorlingroup.org/
any one know if a cracky voise may be due to gorlins in any way ??
duck3 years ago
daughter had cracky boy ish voice for nearly 1 month all tests for throat infections coming back aok???
I am now trying vismogeib. But have to travel from Leeds to Manchester for treatment.
I amnot on benefits but on a modest wage.
sharon653 years ago
Can I get financial help from ant charties. I am applying to Macmillon but if on medication for life this will not cover costs.
charlie033 years ago
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 i...
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...
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
gemstar19844 years ago
awaiting more surgery at present just find it hard as I have no one to talk to who is going through what I am
3 Replies1 Like
Anybody got any tips for dealing with the emotional roller coaster of surgery?
Hebden_potter4 years ago
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 a...
Patient survey results on line at Gorlin Syndrome Group website.
GSGAdmin4 years ago
Visit the Gorlin Syndrome Group website for full details of patient survey results. Site can be accessed at gorlingroup.org
Results of the Gorlin syndrome survey presented at EADO
Results presented at the European Association of Dermato oncology (EADO) Conference in Hamburg earlier this week. Visit Gorlin Syndrome Gro...
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...
Gorlins throughout life
mccleans4 years ago
I am a Gorlins sufferer.
Recently my BCCs are appearing more frequently and are growing at a faster rate.
I am concerned that this migh...
Alternative ways to remove BCCs
eshubi4 years ago
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 t...
Has anyone experienced an increase in cyst formation with Erivedge?
MamaJenny4 years ago
My husband started on Erivedge about 2 years ago. Great results in no BCC surgeries for 2 years, all skin cancers gone. But recently star...
How soon should my son see a dermatologist?
MUM254 years ago
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-on...
Jaw Cyst Solutions
PTCH1ARLIE4 years ago
Im obviously new to this site, nevertheless Im happy to see someone has created such a site for those of us who have this syndrom...
does gorlin scar the heart
sharon654 years ago
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 S...
10 yr old Daughter with Gorlin
roberson4 years ago
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 rec...
lozza19034 years ago
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...
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