Couldn't find what you looking for?

TRY OUR SEARCH!

Hi Everyone: Finally I get to ask a question!!! ;-) Yesterday I was diagnosed with Gorlin's Syndrome - the symptoms I've had for YEARS (since I was a baby actually) were finally put together by a dermatologist specialist I saw yesterday.

Here are my symptoms and this is why he came to this conclusion:

3 or more pin prick like holes in my hands
A cyst in my jaw bone when I was in my teens
Mishapen teeth
Grooves in my teeth - I'm ALWAYS wiping lipstick off my teeth!!! myself and eldest son
Bony Growths on my spine. - my self and my eldest have this
My son has an enlarged Aeorta - which is supposedly one of the sigsn too - myself and my 2 children will be check out in 2 weeks
Macrosyphally - large head - and I just thought it was all brain!!! Myself and my youngest son have this
2 or more fused vertabrae. - myself and my mom had this
CONSTANT basal cell carcinoma - Skin Cancer!!
Ovary Fibrosis
Seizures - my eldest son again has facial seizures
Fused Flanges - toes or fingers - my youngest son has this
1 shoulder blade lower than the other - I have this!
Bone abnormalities - I was born with 5 extra bones in my foot, and my youngest with club feet!

There are other things such as a brain tumour in younger children - which thank God non of us have had.

I was just wondering if anyone has heard of this or is dealing with this. I have already researched it. And it's a relief that all these strange things in our family have come together. Any info would be appreciated

Loading...

Hi bambi! My goodness, I'm so glad to hear that you were able to put all that together because it sounds like a random series of unrelated symptoms so you are really lucky to be able to get help that you needed and that your doctor was able to figure it all out! I don't really have this but as a regular poster along with you, I'm just glad to hear that you got so lucky with none of your kids have any issues. And also I just wanted to say that we're all really glad to have you here. :-)
Reply

Loading...

Thankyou very much HFG that is very nice of you! I won the supporter of the month for June I felt VERY honoured with this. I have always been VERY interested in medical issues and just absorb it like a sponge. PLUS have a VERY strange family with STRANGE physical issues. XD So it just seemed normal for me to do this, I'm sure you understand the feelings of getting to help people, I always wanted to be a nurse but always got personally involved with patients PLUS can't handle bodily fluids!!!!!!! ;-) o.O XD So I probably wouldn't have been that great at it. So this way I get to help people WITHOUT seeing anything LOL! Thanks again!
Reply

Loading...

Hi, Well my daughter has been diagnosed with Gorlins Syndrome.. She has it all.. Has been living with this for 16 years...
Write me and we can talk more. We also are in canada
Reply

Loading...

WOW! Were you or your daughter born in Canada? And did either of you live near a mine or a chemical plant?

the more I have learned the more it is beeing mentioned about Arsenic in the ground and water - which is more common in mining town and near chemical plants! I was one of those as was my mom and my grandad! We were all born in a small mining town in northern England!

How old is your daughter now? And does she have any children? do you or your husband have any similar symptoms or in the family? The genetistis here have written to the Alberta Super Board for funding and permission to send me to another country for a specialized test! Is you daugther in the same boat?
Reply

Loading...

Great group of GS patients here:



I'm certain you can find loafs of information and people who share much in commom.

Kind regards,

Bud

***edited by moderator*** web addresses not allowed
Reply

Loading...

Thankyou Bud I just tried it, but unfortunately it wont recognize my email address! Do you have GS?
Reply

Loading...

Hi Bambi,

Yes I do, I'm 49 years old and was diagnosed at age 10. Have had thousands of BCCs, Jaw cyst, seizures from calcifications, Gallbladder & Thuroid removed for the same reason.

We have several people from Canada on the forum. There is a gathering plabnned for Upper Michigan over the 4th of July that sounds real nice but we won't make it this year.

I think it would be worth your effort to get into the forum. Perhaps make an email account such as gmail just for that purpose.

You may also like or my good friends in the UK also have a website if you do a search for the Gorlin Group UK I'm sure you'll be able to find them too.

Kind regards,

Bud

***edited by moderator*** web addresses not allowed
Reply

Loading...

Hi!

I have GS too. My dad, sister and brother have it too. But no mine or chemical plant around my dad's child house or our house.

My dad's BCCs was treated by radiotherapy when he was younger. He had multiple Mohs surgeries over the years. His face is really affected by all this (how to say nicely disfigured?). To see the damages on his body scares me. I'm hoping that my dad is more affected because of the radiotherapy and the fact that he was not using sunscreen when he was young. But I never was a fan of sun, I do use sunscreen and I don't go outside too much neither but I still had my share of Mohs surgeries (and the scars that come along). Same thing for my siblings. And now I read that Bud had quite a lot of BCCs... Has anyone found any information on what to expect for our physical appearance? Does my dad is just unlucky? I haven't found anything about that yet. I don't know why but I never ask my dermatologist...

Thank you!
Reply

Loading...

Hi Guest! The Radiotherapy would have done the worst damage! You aren't supposed to have ANY radiation - as this would kickstart the deformed gene! Right now I am using Aldera - I look AWFUL! BUT the end result is pretty good! What it does is attack the cancer and then body attacks it and increases your immunity, it looks GRODY for a few weeks, but when healed is ALL gone and is smooth! I have had several surgeries, but the Mohs is done with a VERY fine stitches, I had 3 done on my forehead - basically ALL across my forehead! BUT they did it so well you can barely see them! then I had 1 on my cheek, so they did it in my cheek crease - once again EXCELLENT result! Just find someone that has a LOT of knowledge with this! I DO get down about my face and chest = and we ares supposed to get our passports renewed, so NOT looking forward to that! I even phoned the Passport Office to see if my old picture would surfice, but they said "No!" So that sucked! So we'll see If I can get good coverage!

They are learning more and more about this syndrome so just be aware of NO Xrays - unless TOTALLY needed OK?

And remember that a new scar is NOTHING like when it is healed! THAT I learned the hard way! I was a MESS after my surgeries, because you can't envision how it will look BUT for some reason the surgeons can! I don't like the burning off part - as to me it leaves holes! BUT they have faith and VOILA! It works! So just entrust with them! Also increase your Vitamin D - I take 2000 units extra a day - due to me not going out in the sun! Another FANTASTIC product is called Bio-Oil it is unbelievable for scars! Do NOT use Vitamin E - as this can burn! And watch out for keloids - these are bummers becaues they are hard tissue! So see if they can avoid it!

Hope this helps!
Reply

Loading...

Hello,

Since web addresses are being removed from posts, here's the name of the non-profit organization that's being talked about: Basal Cell Carcinoma Nevus Syndrome (BCCNS) Life Support Network. They're a patient advocacy group for people with Gorlin Syndrome, based in Ohio but operating nationally. If you do a search for them online, their web site has a lot of information about symptoms, manifestations, treatments, and current/upcoming clinical trials.

You can also search the Gorlin Syndrome Support Group in the UK for more advice.

I hope this helps. :-)
Reply

Loading...

Thankyou for this! I just signed up! And started asking away! 8-| XD

I don't know if I'm a strange one or what, but I am awaiting funding to send me to a different country for testing!!! So hopefully there can be some answers for myself and my boys! Thankyou again!
Reply

Loading...

I know this is an old thread but I had to reply because of how happy I am to run across it!

My father passed away years ago and I was thinking about him today. He had this skin condition that no one ever mentioned because it was simply part of life I suppose. I decided to investigate further into what the condition was. Come to find out, after tons of research I am convinced that he had Gorlin's Syndrome. This "skin condition" was the tell tale carcinomas that grow over time with the condition. How numerous doctors never picked up on it is beyond me but that is a whole other topic.

The reason I am here is because I am now convinced that I have inherited the syndrome. Here is what I have noticed through the years. These are the strong signs I am using for this self diagnosis. I will go in to see a doctor about this but until I can I wanted to chat with someone about this.

Here is a list of symptoms..........

1. My father had all of the signs.
2. I was born with a clubbed foot which was corrected soon after birth. One of my toes on that same foot is very crooked as well.
3. My rib cage has always been a bit malformed. You could not tell by looking at me but I notice it.
4. I had unexplainable seizures and blackouts when I was a child.
5. I have suffered from severe migraines since the age of nine. I am not sure if there is a direct correlation here but I figured it was worth mentioning.
6. I have pin sized holes on the back of my neck and in my hair line. None on my hands or feet. Although reecntly a few have started to develop on my face below my lower lip and chin.
7. My spine has always been a bit crooked but not to the point of where anyone can tell at a glance.
8. I can hardly smell anything anymore.
9. I have substantial hearing loss mainly in my left ear.
10. I am fairly certain that I found more than one carcinoma on my back and this scares the c**p out of me! They are small but identifiable as what I am certain they are.

Putting all of this together has definitely prompted me to go to a qualified physician to have things checked out. Thankfully I live close to Houston, TX so I should have some luck with a proper diagnosis. I must admit that I am a bit scared and nervous about this whole situation. I am a normal guy who just dropped this huge bomb on himself and I a bit taken back by it all.
Reply

Loading...

My neice was diagnoised with Gorlin's 3 years ago. She was only diagnosed because of me. My mom called me to tell me after a visit to the dentist that my neice had a cyst in her jaw. I already knew she had spingles deformity and different facial features. I started searching around on the internet and started connecting the dots. Genetics doctor said he was pretty confident that she did not have it, but would test for it anyway. I was right. For 11 years we knew this child was different and several doctors taking a crack at figuring it out, and I was right. She has had a cyst removed from her jaw every 6 months for the past 2 1/2 years. Poor child hardly has any teeth left. I bout with cancer on leg. She also has Hydrocephalus, fused ribs, large head, and growing. She has grown so much in the past 2 years. We are always telling her to wear sunscreen, but she is 14 and normal. She doesn't not understand how bad this could be. She can be in the sun for just a little while and tans like you wouldn't believe. She tans like women that pay for it. So hard to make her under stand. I just pray for her future and that she has no more complications of all this.
Reply

Loading...

Dear Bambi:

I have many shared symptoms with you. I have a large head. Lower fused spine. Pin holes and tiny line cuts on skin. Black-out seizures. Extra sticking out bones in month and feet. However, I also have arrythmias. Nerve problems. Womb polyps. Disappeared bleeding kidney cyst. gut problems.
Reply

Loading...