“I’m incredibly lucky,” acknowledges Nina Gorbach, taking a seat in her cozy new office and art studio near downtown Sonoma. “Unlike other people with certain rare diseases – much more visible ones – I’ve been able to live my whole life with my own disease pretty much hidden.”
She gestures to a pair of crutches leaning against the wall, near a waiting box of office items, yet to be unpacked.
“I’m pretty used to hobbling about,” Gorbach says with a laugh. “Most of the time, people just assume I’m accident prone.”
Up until now, Gorbach has just let them make that assumption. But now she says she’s ready to talk about her disease. And she’s hoping to call greater attention to all rare diseases this weekend as part of the Italian Street Painting Marin festival in San Rafael, a program of the EveryLife Foundation, the Novato-based nonprofit that raises awareness of rare diseases.
Born and raised in Chicago, Gorbach is a licensed marriage and family therapist – best known as the founder of the WillMar Center for Bereaved Children in Sonoma. A trained artist with a keen knack for portraiture – which she studied at U.C. Berkeley, before earning her Masters in Counseling Education at San Diego State University – Gorbach often incorporates art and movement therapy into her practice.
For years, Gorbach has remained almost entirely silent about her lifelong illness, a rare bone disease named polyostotic fibrous dysplasia. But now, in hopes that her story might call attention to the need for increased resources for the study, treatment and prevention of rare diseases – and community support for children and families suffering from them – Gorbach has decided it’s time to acknowledge her condition publicly.
It is, she admits, a major step after a lifetime of silence.
“It’s what most people with rare diseases do,” she nods. “They keep it to themselves. Unless, of course, they happen to have one of the diseases that cause deformity. Then they can’t hide it.”