How long did it take from first presenting with symptoms to being diagnosed with Gorlin Syndrome?
How long did it take for you to recei... - Gorlin Syndrome G...
How long did it take for you to receive diagnosis of Gorlin Syndrome?
6 Replies
•
When I was born, my Mum stated that I was taken away by Dr's. into another room and examined over a period of time due to my "odd" shape, with massive deformities of the head, chest and spine. Back in those days, "eee, When I were a lad..", Gorlin Syndrome was extremely rare or simply not heard of !
When I began to experience dental abnormalities at the age of 12, an SHO ( who is now my Maxillo-Facial / Dental Consultant at my Dental Hospital) stated that "Having only seen one other case of this kind before, I'm sure that this little chap has Gorlin Syndrome" I look back at that to this present day and you just have to marvel at how far Medical technologies / knowledge have advanced, especailly not forgetting how easy it is to diagnose Gorlin Syndrome today, rather than in my early days.
Due to the family history i had a clinical diagnosis almost as soon as i had the signs of the start of cysts. As far as BBC's go i have only just at the ahge of 35 had my first one removed from my cheek so again i have been really lucky
I was diagnosed after the birth of my last child when i was 40.Having asked several times why i had developed BCC from my late 20`s.All made sense after that!!
After 1st jaw cyst me mum looked on internet and linked this with Gorlin and pushed for genetic tests . so from first cyst to blood test back 9 month Which was not bad ..BUT due to me pushing as services did want to see if any other cysts arrived .... I would recommend never just weight ... PUSH...
After starting to go back to the dentist on a reg basis, and my Dr. was BRILLIANT it didn't take long as I looked up all the info I could find on the internet and I was convinced I always knew there was sumthn special or rather UNIQUE about me. then had the blood work done an within a week it was confirmed.
I'm 33. I had the diagnosis at 31 years, after various basaliomi for years. I have removed a maxillary cyst and five leiomyomas. My father is suffering from the same syndrome but had the diagnosis at 55 years.