Has Anyone Been Diagnosed With Gorlin's Syndrome?

Hello! I hope you are still on here! I took a break from SH, but not I'm back! You DEFINITELY have Gorlins - it causes Ovarian and Kidney cysts, jaw cysts, spine, uterus etc. It has a LOT to do with bones and boney growths - I was born with 5 extra bones in my foot! My sister has a spine that sticks out - due to this too! Have you had the PTCH gene test done yet? This will definitely confirm it! Also have your eyes and jaw tested for - panorama xray for your jaw, and see an opthamologist for your eyes! Be careful with xrays - only get them when TOTALLY needed! NO CT Scans - unless an emergency. Where at least 30 sunscreen outside, where TOTAL coverage sunglasses etc. IF I can help you with any information let me know, I've learned a LOT since my diagnosis! Also check out Facebook and other sites for information - BUT beware of sites like that because you really have no on checking the information! I don't like people diagnosising themselves, can lead to HUGE upset! Hope to hear from you! Good luck and health!

I HAVE A 18 YEAR OLD DAUGHTER THAT WAS DIAGNOISED WITH THIS RARE DISEASE WHEN SHE WAS 14 FROM A DENTIST APPT AND DERMO,SHE SEES A DOC THE UNIVERSITY OF TN WHICH IS A WONDERFUL DOCTOR ,SHE HAS MOST CHARACTERISTICS OF THE SYNDROME SHES HAD 4 SURGERYS AND MULTIPLE CANCERS REMOVED IN THE LAST 4 YEARS,HAD A TUMOR IN HER NASAL CAVITY THE SIZE OF AN EGG,SHE IS HAVING A HARD TIME DEALING WITH THE DISEASE BUT IF YOU WOULD LIKE MORE INFO ABT THIS PLEASE FEEL FREE TO EMAIL ME AT ANY TIME MY NAME IS TINA HORTON AND DAUGHTERS NAME DESTINY

Hi Tina and Destiny: My son too was having a hard time dealing with it! It seemed to just WHAM WHAM WHAM one after another! Which is VERY common with this damn thing! Tell Destiny that this is NOT who she is it's WHAT she has, tell her to work with it, know her limits, know what to do what not to do! Has her doctor talked about increasing her Vitamin D intake - substantially? When I was having about 20 lesions popping up one after another, I was DEVASTATED so when I took Vitamin D - 4000 units a day all of a sudden the outbreak stopped and I felt better! When I get stressed I notice they pop up! IF she is having outbreaks of skin cancer ask her doctor about Aldera cream - it's like a chemotherapy cream, it makes your body attack the cancer! I get sicker than a dog from it - for some reason I REALLY react to it, but it does the trick over having it surgically removed! They just found a large lesion in my hairline, so I'm using Aldera right now - as they would leave a bald patch on the side of my head and I was like "OH NO!" so this way is better! Tell her it's NOT always constant, infact if she takes care of herself - sunscreen, sunglasses, no xrays Vitamin D , she should be able to keep it at bay or under control! There is a FANTASTIC network online - admin IF I'm not supposed to do this sorry about it - it's called the Basal Cell Carcinoma Nevus Syndrome - http://www.gorlinsyndrome.org/ GREAT support group with ALL your information that you need - upto date meetings and trial medications etc. They helped me a LOT - also put your mind at ease too! I felt SO guilty with my son - he's been through HELL I felt SO bad for his pain! Infact after his jaw surgery he wouldn't talk to me for a bit - TORE ME APART - so I know from a parent point of view it's hard to stop putting guilt on US for carrying this gene and giving it to our most precious children! It's hard that's for sure - we keep saying "There are people with worse things, but sometimes it's like b****r OFF!" I too am here for you so please know that too OK! God bless to you ad give Destiny a hug for me!

Hi Bambi,

 

This is way late, sorry about that, and you probably have all this info already, but if you go onto Facebook there are actually a number of great pages on there about Gorlin's Syndrome. Support groups and all. I have Gorlin's too, so did my mum, and for a long time I thought we were the only ones who had it, in Australia at least...so it was, in a way, comforting to find people who actually lived near me that have the same thing.

Take care of yourself, and don't stay out in the sun too long

 

Neanderthal

Hello,Bambi27,My daughter was diagnoised at age 14 with the disease,she has been through four surgerys for the jaw tumors and several biopsys for her severe skin cancer,she does suffer from depression and the calcium build up on her scull which has caused her to have a learning disability as well she goes for another MRIi at the university of TN this month ,shes had a hard time dealing with it at times,so glad somebody else out there knows whats going on with this disease besides myself...Thanks for emailing me back...Tina Horton

To Neadrathal and Tina - I belong to the facebook page too - I'm Dawn - I worry SO much about MRI's etc. as they aren't supposed to be used on "us" hopefully they know that! There are more and more of us, I don't know if either of you are aware of some research on this syndrome? I come from Northern England - mining town,, my entire family for generations after generations were miners! there is a HUGE correlation between Arsenic poisioning and Gorlins! Arsenic is naturally in the soil, so when the soil is disturbed (mining, farming) the arsenic seeps into the water system and then causes certain peoples DNA to change for ever! The highest concentration of people with Gorlins is in mining areas - or from mining areas! Such as northern England, Wales, Australia, Norway etc. Also in some of the States - where steel works, coal mines, exist! Have you traced your family tree Tina? My mom did geneology and traced us back to the early 1700's well there is a BUNCH of people that died from "Rat Bites" we now think that was skin cancer - as families would work in the fields as well! It is irritating but yet interesting! Was Destiny born with a large head Tina? Like the large nodule on the front or the plates fused together - my youngest has the large node as do I! - ALL BRAINS BABY!!!! LOL My eldest had the fused plates, bad neck and spine - we are ALL different which is strange as well!

I jsut found your post. Hope you and your family are well. Mu daughter was just diagnosed with the same condition. Her jaw zysts are really bad. She has to have a bone graft done. She was born with a larger then usual head, a skin tag on ger buttocks, flat feet and in time her back started curving more. Her skin so far is ok, but she gets sun allergies in the spring when the sun first comes out.

Hi there, I was told that I had this Gorlin's Syndrome back in the mid to late 1990's.
It can be hard to live with, as alot of people who i thought were friends walked away when they found out, and without wanting to know the truth of this syndrome.
I have had many operations and am waiting for another three hour operation sometime in the next 8 weeks.

Hello all!! I have to share the motto of the BCCNS Life Support Network " YOU ARE NOT ALONE!" It is actually printed on the T-shirts that get sent to children with the condition to be put on thier Band-aide-Buddy. I was diagnosed with GS/NBCCS in 1990 after my second bout of jaw cysts, and they found a brain cyst at that time, and they removal of BCC's started. There are now a few support groups for the condition. There is one in the US, UK, Canada, Austrlia, I know there are others I just can't think of the locals. The BCCNS Life Support Network recently did a short DVD titled "WE ARE NOT ALONE" It was recently taped at a regional meeting in Ohio. I can say as someone who has met a number of people with GS/NBCCS we need eachothers support. I encourage you to locate the support group nearest you and share or ask questions. Take care!! JWerky

Do you know of any support groups in ms

Yes i have it ...main issue for me is the basal cell carcinomas...you can research sun protection (broad rimmed hats, sunglasses (as basal cells on eyelids and around eyes can be tricky), mohs surgery, 5% immiquimod cream (aldara) i dont like the oral medications available due to side affects) and be aware you do have options to genetically prevent your children from having the syndrome-see a genetic councillor, also dont treat your bcc with radiation as gorlin syndrome is sensitive to many different radiation not just sunlight as it spurs more bcc for us....good luck