By: Stacy Bissell
When my 8-year-old daughter, Rowan, was little, she would go up to people on the street to tell them all about her life: her latest adventures, her dreams of running a museum, an animal rescue, being a famous singer and on and on. Then and now, she wants to be seen and to be able to tell her story. Gorlin syndrome is part of her story.
Rowan was diagnosed with Gorlin syndrome, a rare genetic disorder, when she was 5 years old. After a couple of years bouncing around to various doctors for odd things and monitoring bumps on her face and body, a pediatric dermatologist biopsied one of them and determined it was a basal cell carcinoma (BCC), a type of skin cancer associated with Gorlin syndrome. Gorlin syndrome is also known as Nevoid Basal Cell Carcinoma Syndrome (NBCCS) due to the proliferation of BCCs in affected individuals.
Our family was floored, unsure of how to navigate all the doctor’s appointments, protocols, new recommendations, treatment options, and our mental health. Our diagnosing dermatologist suggested we connect with the Gorlin Syndrome Alliance (GSA), a patient advocacy organization focused on building community, seeking better treatments, and improving the quality of life of those affected by Gorlin syndrome.
Connecting with the GSA has been a beautiful silver lining, as we have met incredible people who have supported Rowan and our family on this journey. Rowan met another girl with Gorlin syndrome, who gave her a stuffed elephant that she treasures; it reminds her that she is not alone.
In Rowan’s first surgery, she had about two dozen BCCs removed from her face and body. Since then, she has had over 1000 BCCs treated in a variety of ways, from excision and laser removals to photo dynamic therapy and a variety of topical creams. She also sees a genetic counselor as well as numerous other specialists, and has maintained her outgoing demeanor, even crafting elaborate mazes on paper for her doctors.
Nothing will fully stop the unrelenting growth of her BCCs but reducing UV exposure from sunlight is crucial to minimizing her BCC burden. High SPF sunscreen and sunblock only provide so much protection; but UPF (Ultraviolet Protection Factor) clothing is best. Coolibar offers kids clothing that protects her with the highest rated UPF 50+ that blocks 98% of UVA/UVB rays. Rowan wears sun hats, sunscreen, and UPF clothing every day. Coolibar’s sun hats have at least a 3” wide brim to protect her scalp, ears, neck and face from the sun.
Gorlin syndrome and UV protection is a big part of her life, but Coolibar helps it be a smaller part, so she can focus on being the amazing, outgoing, inspiring, strong-willed kid that she is. Rowan is heading into her 3rd grade year at French American International School this year, and she has so much of her story ahead of her. I can’t wait to experience her impact on the world — she’s just getting started.