SJIA: It's Not Just "Arthritis" | Cincinnati Children's скачать в хорошем качестве

SJIA: It's Not Just "Arthritis" | Cincinnati Children's

http://www.cincinnatichildrens.org/rh... Some people dismiss “Systemic Juvenile Idiopathic Arthritis” as “just arthritis.” But for kids who have SJIA, there’s more to it than aches and pains. Emma Brown, Colorado patient’s mom: “My daughter, Reagan, was diagnosed when she was 9 months old, perfectly healthy baby, you know joyful, happy, no problems. Got sick with the stomach flu and we landed in the hospital in Denver for about two weeks, going through the gamut of everything, trying to figure out what it was, and nobody knew anything. We finally got another opinion from a rheumatologist, did an MRI and confirmed that it was Systemic Juvenile Idiopathic Arthritis. Um, we went home thinking, that, ‘Oh, thank God, it’s not cancer, and you know, take some ibuprofen, and maybe some steroids and we’re good. Um, and little did we know that that was a tiny fraction of this huge story that we were about to go on.” What can start as daily rashes and fevers can be symptoms of SJIA. It is the rarest form of childhood arthritis. It is hard to diagnose. It can affect the whole body and make not just joints but internal organs swell. It can even lead to kidney failure. There is no cure. Heather and Mark Klopping, Texas patient’s parents: “It’s mysterious. It’s idiopathic, which means they don’t know what causes it, so we feel that we need to stay on top of it.” Cincinnati Children’s and the Systemic JIA Foundation are working with parents to hold family education days and make social media connections to raise awareness and provide support. Daniel Lovell, MD, MPH, Associate Director, Division of Rheumatology: “The unfortunate fact is, in the United States, there’s only about 250 doctors who have the specialized training to take care of children with systemic JIA and other related diseases.” Emma Brown: “And that’s what’s terrifying is that there’s not enough knowledge about this. There’s not enough awareness about what our kids to through. They hear the word ‘arthritis’ and well, you’re never going to die from that. But that’s the reality of our kids’ lives is that they catch a virus from something it’s very real.” Voiceover: Parents of kids with SJIA are pushing for more research and understanding. Tammy Woodwick, Minnesota patient’s mom: “I think the disease is so terribly misunderstood, even amongst our immediate family, how sick he’s been for two years. I don’t think people understand the danger he’s been in. So my hope is that we can put a better identification on it and so people don’t think it’s just arthritis, and, of course, a cure.” Dr. Lovell: “The important take-home message is: Effective treatments are available.” The key for parents of kids with SJIA, he says, is to get to a rheumatology specialist to see what’s most effective for your child. For more information about expertise at Cincinnati Children’s, go to http://www.cincinnatichildrens.org/rh...