A sophomore at Ensworth High School in Nashville (TN), and founder of the KARDed program (Kids Aware of Rheumatoid Diseases and educated), Taylor Cox was awarded this year’s Largest Youth Team at the Nashville Arthritis Walk.
Watashi no namaewa Taylor Cox desu. Ju go sai desu.
Translated into English it means my name is Taylor Cox and I am 15 years old. My first sentence may seem foreign to you since it is written in Japanese, but just imagine how foreign it must be for a child or teen to be told they have arthritis. It is only supposed to affect old people. Most people have never
heard of juvenile rheumatoid arthritis (JRA) and have no idea it affects over 300,000 kids in the USA. They are shocked when they find out more kids suffer from JRA than from Type 1 Diabetes. However, a young person suffering from JRA is all too aware of the seriousness of the disease. The pain, possible loss of mobility, difficulty walking, and being unable to participate in day to day activities like a normal kid are all constant reminders. Not to mention, the miserable side effects from medications.
People know about adult arthritis but I feel JRA remains a mystery. I have discovered physicians and school nurses are not comfortable diagnosing or understanding how to deal with children who suffer from JRA. Therefore, 7 months ago, I started a program called “KARDed,” Kids Aware of Rheumatoid Diseases and educated. I have created awareness of JRA by speaking to over 2500 people at school assemblies, youth groups, and corporate manager's meetings, as well as through coordination of fundraising activities at 3 schools. I have also spoken to a member of Tennessee Senator Lamar Alexander's staff to bring attention to the lack of government backing of JRA and how much it is needed. I need your help to raise the importance of funding for research, as the reception was lukewarm at best. I was told there are many good causes but that cosponsoring a current bill would be problematic as there are many diseases competing for funding.
Most kids are scared to speak out about themselves, thinking it will make them appear different and odd. However, if no one will take the initiative to create awareness of JRA, help will be slow and kids can't wait! I want people to know there are too few pediatric rheumatologists in the USA and a kid who is suffering may not be able to see the proper doctor in a timely manner. In many cases, you have to be diagnosed first before making an appointment, which can be hard since JRA is so easily misdiagnosed.
Medications need to be researched since most are not approved for use in children because the long term side effects being unknown. However, kids may be forced take them anyway to try to live a normal life. With medications, doctors' bills and lab fees costing so much, teens face more pressure than the normal student. Even if they feel badly, they must excel in school since they must be marketable to employers with health benefits which will not discriminate against them for having a preexisting medical condition. With rising health costs, this may become more difficult. More doctors, medical research and medical insurance options are all issues which need to be addressed.
Kids should have the right to just be kids and not worry, but teens with JRA are smart enough to realize the challenges which face them. I hope by creating awareness of arthritis, some of these challenges can be minimized.
I know I cannot do it alone so I have taken an active role by speaking to adults and young people and feel it is important to take part in the arthritis advocacy program. This is one way I feel I can help stop diminishing the dreams and opportunities of so many kids and young adults who suffer from arthritis.