GROWING UP IN PUBLIC -- part 2

GROWING UP IN PUBLIC
FROM POSTER CHILD TO PRACTICING PROFESSIONAL

Editor's note:

Each day leading up to and including Valentine's Day, this blog will tell the story of my bride of 22 years in her own words.

By Heidi Johnson-Wright

By my mid-teens, I would get to travel to several major cities, be interviewed by top rate print and broadcast journalists in New York City and shake hands with famous politicians, such as veteran U.S. Senator Alan Cranston.

Not long after I began working to increase awareness of juvenile arthritis, I was delivering speeches before thousands of people and I even had my own column in a national publication.

Closer to home, my disease process was totally out of control, mostly because it was so tough to find a competent specialist in juvenile arthritis more than two decades ago. Finally, my parents found a good pediatric rheumatologist, he found the right balance of medication, and I found some stability and normalcy.

Once we could exhale for a while, we began to look around for some answers and ideas for coping. Soon my folks were volunteering extensively with the local chapter and my mom was appointed to several committees on a national level for the Foundation. Years later, she co-founded the American Juvenile Arthritis Organization, a group comprised of health care professionals and lay people whose sole focus is the forms of arthritis that affect children.

Where was I in all of this? Like any young teenage girl, with or without a chronic health problem, I was obsessed with clothes, rock 'n' roll bands and, of course, boys.

But I was also in search of my own answers about my arthritis and what I could expect from the future. I sometimes thought about the thousands of other kids with arthritis facing the same problems.

TOMORROW: Juvenile Arthritis

Heidi Johnson-Wright is a licensed attorney and Americans with Disabilities Act expert living in the heart of Miami's Little Havana. She and her husband, Steve, write free-lance articles about travel, entertainment and enhancement of life for persons with disabilities.