No one told Shelly Baer how hard life with juvenile rheumatoid arthritis, or JA, would be. How isolated, afraid and confused she would feel, how especially difficult growing into womanhood would be.

How could they? She was 3 when the mysterious symptoms first appeared: a swollen knee, a mild rash, then a swollen finger, a fever. But, before long it was clear that arthritis was quietly disintegrating the cartilage in her bones and joints, making her wheelchair bound and disfigured by age 14.

“We had hoped it was isolated to a few joints, that it would go into remission,” says her mother, Sandy. “As a parent it was devastating to watch, unbelievably painful, trying to shield her from the stares, the whispers.” 

Instead of parties, boyfriends and school sports, Shelly's teenage years were marked by painful surgeries and long periods of recuperation. The toll on her self-esteem was incalculable.

“I never wanted to be in my body or look into a full-length mirror,” says Shelly, now 48, her petite, 4-foot, 11-inch tall, 100-pound body having endured 20 surgeries to date – including replacement of her knee and hip joints – along with countless hospital stays, X-rays, blood draws, therapy sessions, splints and shots.

“Most of my life I've only had a dim awareness of my physical stature: my short arms, my misshapen hands and legs, the way I walk, knowing I was different. I've had to detach from how I look in order to cope, to move on with my life.”

Something Was Missing

Despite her difficulties, Shelly found success in intellectual pursuits. She received her bachelor’s degree from the University of Miami in psychology and special education and her master’s degree at Yeshiva University’s Wurzweiler School of Social Work – and quickly grew to become an accomplished licensed clinical social worker committed to helping abused children, dysfunctional families and people with HIV.

But, something was missing. Finding self-acceptance was a struggle. With the help of a therapist, the support of her parents and two younger siblings, Shelly transitioned slowly. Her first date and kiss came at age 25 and her own apartment a year later.

Attending the Arthritis Foundation’s Juvenile Arthritis Conference turned her attention to advocacy in Washington, D.C, where she spoke with legislators about raising awareness and funding for research. Recognizing the lack of resources for the disabled in her own city, in 2001 Shelly used a stipend from the Dade Foundation to publish ACCESS Miami – a 36-page directory for the disabled. A fourth edition has just been published.