10 yr old Daughter with Gorlin

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.

2 Replies

  • Thanks for your post in relation to your daughter's condition. The most important aspect of Gorlin is to ensure that individuals undergo regular surveillance for the complications associated to the condition. It sounds very much as though this is happening considering all the healthcare professionals your daughter is seeing. I note your comments about the skin cancer and whilst it is normal for lesions to appear in puberty it is well worth ensuring at least a six month or annual check for skin problems. I hope you don't wait too long for the results or genetic tests, they are important and subject to results testing on other family members is essentail, especially as the condition is so variable. Good luck with all.

  • We are seeing our Dermatologist every 6 months..we see the Geneticist on Monday again

    to get Blood work results..thanks for your comment.

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