Juvenile Rheumatoid Arthritis Patient Story

Meet Joy Ross- Juvenile Rheumatoid Arthritis Patient & Champion of Yes

When you’re living with arthritis, it might seem like you’re continually coming up against the things you can no longer do – so many Nos in your life. On top of ongoing pain, stiffness and fatigue, arthritis can create mobility problems that interfere with your career, social life or activities you’re passionate about.

So what can you do to turn that around – to start saying Yes again? What enables some people with chronic illnesses to live full, satisfying lives despite their disease and limitations?

Many factors come into play, and everyone’s situation is unique, but one quality that helps these people is one that anyone can develop – resilience. Experts say that the ability to navigate and even learn from adversity helps you keep going, mentally and physically, no matter what life throws your way.

“Individuals with arthritis and related diseases who find a way to be resilient tend to stick to their treatment plan more often. They manage their health better, and have an easier time dealing with negative situations, too,” says Rochelle Rosian, MD, a rheumatologist at the Cleveland Clinic. “Resilience allows you to make arthritis one part of your life instead of your whole story,” she says.

We spoke with one inspiring person who has encountered plenty of obstacles since her arthritis diagnosis. She’s figured out how to turn “No” into “Yes” – and you can, too.

True Vision: Joy Ross

36, mom, speaker and arthritis advocate; Portland, Oregon

Joy is resilience personified. Diagnosed with juvenile rheumatoid arthritis (JRA) and the eye disease uveitis at age 3, “I don’t remember a time when I had all my vision,” she says. Her joint symptoms began flaring in her teens, and her arthritis eventually forced her to drop out of college.

But her supportive parents challenged her to live like other kids. She went to a regular school rather than one for sight-impaired children, and she learned to do things for herself. “That ability came in handy after I married my husband, George, and we had two daughters, Georgiana and Isabella,” says Joy.

But in December 2007, her retina started detaching as a result of uveitis-related damage. In 2008, after an ­unsuccessful surgery to reattach her retina, she lost her vision completely.

“Worse,” she adds, “the same year I went blind, both of my daughters were diagnosed with juvenile rheumatoid arthritis – the same disease that had robbed me of my vision.”

As a result of the biologics Joy takes, she’s had more staph infections and hospitalizations than she cares to recall, she says. But she persists, and has become an active advocate for others with similar challenges.

Thanks to her faith, family and her guide dog, Antonia, Joy is fairly independent. “I walk everywhere with Antonia,” she says. “The girls and I go to the park and the mall; the other day we did a pottery-painting class together.”

She thrives by helping others, she says. “Our whole family volunteers as often as possible. We teach our kids to be arthritis advocates, volunteer at arthritis camps and have even gone to Washington, D.C., together to advocate on behalf of the Arthritis Foundation.”

Most important, she adds, she’s a mother and role model for her daughters.

Despite all her obstacles, “I have come to see my struggles as a gift,” says Joy. “I’ve used it as inspiration to speak in front of crowds of people who have similar problems and give them hope. These trials have given me a passion to advocate for those with arthritis and vision problems. As I tell others, we all have our disabilities, even if they’re not obvious. It’s what we do with them that counts.”

Related Video

Joy Ross shares her story at the 2014 Arthritis Foundation Annual Meeting.

Tags: , , , , ,

Leave a Reply

Your email address will not be published. Required fields are marked *