A collaborative care team treats an eight-year-old for Sturge-Weber syndrome, which makes her prone to seizures and other complications.
Julia's story
Living with Sturge-Weber
Learn about how Marissa Terrell lives with Sturge-Weber in a video narrated by Julia Terrell, The Sturge-Weber Foundation.
My daughter Marissa was born with Sturge-Weber, a neurological disorder marked by a birthmark on the right side of her face.
You notice Sturge-Weber first because of the port-wine birthmark, under which blood vessels calcify over time. This can cause seizures, glaucoma, developmental delays, muscular weakness, and other symptoms, depending on the birthmark’s location.
Marissa sees a whole care team, including a dermatologist, ophthalmologist, behavioral specialist, and musculoskeletal specialist. Her dermatologist uses a pulsed dye laser to break up the extra blood vessels under the skin, lighten the birthmark over time, and impede its growth. While this can help reduce seizures and eye complications, she will deal with the seizures and glaucoma for the rest of her life.
To Marissa, Sturge-Weber means polka dots — that's what she calls them when we have a laser treatment — and she'll walk down her school’s hall with those dots on her face, and smile and wave to everyone like there's nothing there. She may go through a lot of different health care experiences in her life, but at the end of the day, Marissa is just a fun-loving little girl.
The dermatologist's perspective
“After 30 years of performing a wide variety of laser treatments, there is nothing more emotionally rewarding than treating a young child's port-wine stain. I began to treat Marissa's port-wine stain in her first year of life, and over the last few years, with subsequent treatments, I have seen the joy on her face as the birthmark melted away. There is nothing better in my dermatology practice than seeing such happiness in a child and her family.”
─ David Goldberg, MD, JD, Skin Laser & Surgery Specialists of New York and New Jersey
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