Hi - I just wanted to introduce myself, I'm Dawn and I was diagnosed with Gorlin Syndrome when I was 7 years old - I'm 43 now.  To say its been hard is an understatement - my body hates stitches, doesnt heal properly etc etc.  As a result of which 3 years ago I was put on the Vismodegib trial - after 9 weeks I became so ill I came off the drug.  Things went from bad to worse and after having MOHs surgery I agreed to try the Vismodegib again - that was in April last year - I was on the drug for 6 months, i had pretty much the same side effects but not as bad, and there were no signs of the skin cancers.  My consultants are using me as a "guinea pig" as apparently most people on the drug have one or two skin cancers - I have hundreds - my consultant basically said that most people grow hair/skin follicles but i grow skin cancers.  I came off the drug in October and am currently on my 3 month "break" - they're hope is to have me on the drug for 3 months, off for 3 months and to keep rotating it.  I became quite bad towards the end of the 6 month stint, very depressed, had a breakdown, had quite bad hair loss (including total loss of eyebrows and eye lashes) - also this actually escalated after I'd stopped the drugs.  I finally got my taste back in the middle of December - oh my god how amazing was it to taste a cup of tea again - and I've been eating like a pig since as for the first time in 8 months I can taste things!  I am due to go back on the drugs on 23rd Jan.  I just wanted to say hi and if there is anyone on here with Gorlin, or that has had/is thinking of having the Vismodegib I'd be happy to talk to you.