Nina Gorbach steps out of the rare-disease shadows

“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.”

Gorbach was 4 years old when her parents and doctors first began to realize something was wrong. Fibrous dysplasia is a genetic bone disorder in which scar-like tissues form where bone normally does. The condition can weaken the affected bone, making it easy to fracture. In some cases, multiple bones are affected. In Gorbach’s case, the dysplasia affects one leg. Unfortunately, when she was first diagnosed in the 1950s, there was still no name for her specific disease, and were it not for the extraordinary insight of her doctor in Chicago, Gorbach says she likely would have lost her leg.

“That’s just what happens,” she says. “Many rare diseases go completely undiagnosed, because no one knows what it is, or what to look for.”

Just as WillMar – named for her parents, William and Mary Sagall – was founded in response to her own experiences, she’s recently begun volunteering with the EveryLife Foundation for Rare Diseases.

“This whole world of rare diseases, it’s not something I ever knew much about,” Gorbach says. “It was only a few years ago that I found there was actually an organization for the specific disease that I have, that I was born with. I understand it’s not the rarest disease there is, but I’ve never met anyone else with it.”

Gorbach says she’s always been drawn to projects for “anyone who is marginalized.”

One of EveryLife’s unique programs is RareArtist, established to exhibit the work of individuals affected by rare diseases, helping them to tell their stories through art.

“It’s a great fit for me,” says Gorbach. “Because I love art, and I use art as a healing practice. It’s a unique coupling, helping to raise money for these diseases and to support artists, at the same time.”

For this weekend’s Italian Street Painting festival, Gorbach has chaired a RareArtist exhibition. At the festival, which takes place this Saturday and Sunday, June 25 and 26, a tent will house a number of works by RareArtist participants, and event organizers will be on hand to talk with visitors about the artists, their work, the RareArtist program, and the importance of programs that seek to help those with rare diseases.

Gorbach says she is especially thrilled that Sean Hepburn, filmmaker and philanthropist, has lent his support to EveryLife, and to the Italian Street Painting festival.

“This wouldn’t be happening without him,” she says.

The son of legendary actress Audrey Hepburn, who died of a rare form of cancer herself, Hepburn is making available a number of rare art pieces from his own collection, some of which will be on display, others for sale. Of his mother’s disease, Gorbach says, “It doesn’t matter if you are regular person, or one of the most famous celebrities of all time. If you have a disease that is rare, there often just isn’t enough information available to diagnose and treat you.”

There are six or seven thousand rare diseases that we know of, Gorbach says. “Though rare, they still affect millions of people. And some of them are very, very rare. When I look at the list, I’ve never heard of any of them. When something is that rare, there’s almost never any money to study them or find treatments for them.”

This, Gorbach says, is what EveryLife is working toward changing.

“And Italian Street Painting Marin,” she adds, “is a marvelous way of raising money while calling attention to these issues.”

The truth is, she acknowledges, not everyone with a rare disease is as lucky as she has been. Her parents, Gorbach points out, were a major force of good in her life.

“Their perseverance – and the brilliant doctor they found – it saved my leg,” she says. “Millions of children in the world don’t have that kind of support and possibility.”

Gorbach pauses, glancing around at the office she has yet to decorate with her own artwork, another step in turning the new workspace into a place of support, healing and transformation.

“The heart is infinitely wide,” she smiles. “Because of all the people who’ve shared their unique gifts with me, I can grow and remain creative. Not everyone gets those chances in their lifetime, but everyone deserves to.”

Email David at david.templeton@sonomanews.com.