Diagnosed with juvenile rheumatoid arthritis (JRA) when she was four years old, Graci has endured multiple lab tests, biopsies, injections and medications. In spite of all that, she has often remained — in her mom’s words — outgoing, funny, athletic and honest. But during a particularly bad flare when she was seven years old, her parents saw a drastic change in their daughter.
“Graci’s knee, ankle and hip flared up, and she found herself struggling to walk and keep up with her classmates,” recalls Anna, Graci’s mother. “This left her in a wheelchair for a period of time. We could see her spirit starting to fade, and we could see her slipping into depression.”
Continue reading Go, Go, Go Graci! Graci Diggs Named 2015 National Youth Honoree for Jingle Bell Run/Walk
Social media is great for a lot of things — reconnecting with old friends, finding that next job, catching up on the news and perhaps even wasting a little (a lot of!) time. But when Anna Legassie logged on back in May, she wasn’t doing any of those things. She was just trying to get her medicine.
From Excitement to Disappointment
Anna, now 31 years old, was diagnosed with systemic juvenile rheumatoid arthritis (JRA) when she was 11 years old. She has endured six hip surgeries, multiple hospital stays and a constantly changing cocktail of medications to keep her arthritis at bay. After a particularly difficult spring suffering through the side effects of methotrexate, she and her doctor decided to decided to try Orencia (abatacept), a biologic drug that she would would receive by infusion every four weeks. Anna had tried most of the other biologic drugs on the market. None of them had been a fit for her.
Continue reading When Failure Isn’t an Option
Some rising high school seniors will scout colleges for their social scene. Many might choose a college based on its proximity — or lack thereof — to home. Others will simply go where their friends are going. Lexi Narotzky has a different set of criteria.
“I’m looking to go to Vanderbilt in Nashville if I can get in,” says Lexi. “It’s a smaller school where I won’t have to walk as far. The campus is very flat and very accessible for days I am not feeling well. And, the weather is better than it is here in New Jersey.”
Lexi has been making choices like this since she was a toddler. Lexi clearly remembers when she was diagnosed with polyarticular juvenile rheumatoid arthritis, even though she was just three years old.
“I remember the exact night it all started,” Lexi says. “I had just gotten home from dance class, and I was wearing my tights. All of the sudden, I couldn’t move. “
In the weeks that followed, Lexi spent many days in the hospital and visited multiple specialists. High fevers and swollen joints stumped doctors, even at some of the country’s most renowned medical institutions.
Continue reading Lexi : Simply Telling Her Story Leads to an Important Invitation
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.
Continue reading Meet Joy Ross- Juvenile Rheumatoid Arthritis Patient & Champion of Yes