“Totally amazing!” says 17-year-old Lexi Narotzky.
She’s not talking about her recent prom or even her summer plans to study in California. She’s talking about last week’s visit to the National Institutes of Health (NIH).
Lexi, who was diagnosed with polyarticular juvenile rheumatoid arthritis at three years old, found her way to the NIH after she shared her story with Congressman Rodney Frelinghuysen (R – NJ) at the Arthritis Foundation’s Advocacy Summit back in March. Struck by her narrative, Frelinghuysen invited Lexi and her entire group to visit the NIH and the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) so that they could see firsthand the research that is being done to combat arthritis.
Continue reading One Story Can Change Everything: Visit Gives an Inside Look of the NIH
Arthritis, especially when it affects children, can result in having to say No to many, many things. Just getting out of bed can be a challenge, let alone battling big insurance or pharmaceutical companies to gain access to care that’s needed to manage the disease. While we do all we can to help increase the number of everyday victories, there are times when big victories are achieved in the lives of those with arthritis. And when they are, we celebrate them.
Just this past month, after a three-year-long fight, Zane Breier, who suffers from scleroderma morphea, achieved one of these victories. Last year, in the middle of his fight, Zane was our Youth Honoree for the Jingle Bell Run event in San Diego, helping raise awareness, support and funds for our collective fight against arthritis. At the same time, his condition was rapidly declining and began to spread and affect more areas of his body. Plastic surgery became a consideration, as Zane’s face, tongue and eyes were affected by his disease. He had to have gum grafts, and he and his family began to lose hope. The fight became tiring and the obstacles felt insurmountable.
Continue reading Arthritis Foundation Helps Achieve a Big Victory in One Boy’s Fight Against Arthritis