Raising awareness of Gorlin Syndrome

While living with Gorlin syndrome (a rare autosomal familial cancer syndrome), common phrases I’ve heard when mentioning Gorlin Syndrome to various people, including friends, colleagues and some specialists is “What’s Gorlin Syndrome?” or “What’s that?”. Now that I am more aware of others also living with Gorlin syndrome, I would like to help our support group raise awareness of Gorlin Syndrome in a holistic way.

I gained a greater perception of how such awareness could progress when I attended Gorlin Syndrome Alliance’s International Conferences in Chicago in June 2023. There, various medical professionals link with their support group, Gorlin Syndrome Alliance, to broaden the treatment options through research; providing support and optimal access to associated medical services. This was demonstrated when health professionals including Dermatologists, Genetic counsellors, Paediatric psychologists, Haematologists, and researchers shared key information giving a greater sense of hope for people living with Gorlin Syndrome. In particular, when they refer to the forms of treatment they are establishing and trialling having fewer side effects and social impact than some current chemotherapy-type medications and the surgical removal of BCC’s (basal cell carcinomas), the most common ongoing symptom.

Attending such conferences about Gorlin Syndrome, also increased a sense of inclusion. Being amongst various people living with Gorlin Syndrome and becoming more aware that the level and form of each symptom of Gorlin Syndrome can vary quite a bit individually. Such collaborative discussions about Gorlin Syndrome enables awareness amongst various social groups, departments and clinics. This collaborative and holistic approach decreases the sense of isolation, limited options, and preventable misperceptions that many people living with Gorlin Syndrome in Australia commonly face.

The GSNV has helped us initiate awareness for Gorlin Syndrome and I hope this information encourages people to read further about Gorlin Syndrome whether as a carer, family member, friend, educator, or, for personal reasons, then that’s a big step already, in raising awareness towards Gorlin Syndrome.

Further information about Gorlin Syndrome or accessing support is available through Gorlin Syndrome Mutual Support Group on GSNV’s website. Or visit Gorlin Syndrome Alliance’s website.