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 recovered very fast. We are in the process of seeing a Heart dr. & Orthopedic dr. & Eye dr. She has been to a dermatologist but most skin cancer w/ this syndrome don't start until puberty. We are very new to this & would love advice to help my daughter & us cope w/ this.
After my daughter's Genetic test come back.. they will then test family members. No close family members have no signs or symptoms of Gorlin.