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So who am I and why am I talking about Juvenile Arthritis to parents, kids, teens and young adults on CreakyJoints?
According to the Arthritis Foundation I am a “Face of Arthritis” and an ambassador for the disease. According to the American College of Rheumatology I am an advocate that goes to Capitol Hill to fight for awareness and research funding for arthritis. And according to the Arthritis National Research Foundation I am a board member. According to CreakyJoints I am the “Voice” for kids with arthritis. According to the media I am this fashion personality who won’t shut up and stop driving them crazy about Juvenile Arthritis.
And according to me? I am a passionate fighter working to create awareness and understanding for the kids, teens, young adults and their families who live with Juvenile Arthritis.
Why? Because I have lived with Rheumatoid Arthritis for over 23 years. I wrote a book about trying to balance my glamorous life in television with my secret life at UCLA Medical Center as a patient. I have been on almost every medication and every combination of medications. I have either failed them or they have failed me. Many medications have put me in the hospital. But along the way I have learned a lot…a lot about this disease. And lucky for me I was in the first biologic research program and it worked, putting my joints into remission.
I understand this disease from the inside out. I know there is no cure, and remission is only for some things, not everything. I have remission of my joints and then I have my “everything” that keep popping up, getting in the way of my life.
What I didn’t know for the many years I hid my disease was that children and young people got it. I lived with the stigma that it was an old person’s disease. But I wasn’t old.
And then I found out about the kids. How could they deal with a disease that I could barely deal with? How could their parents understand what they were going through without going through living with the disease themselves? And somehow, I’m not exactly sure how, I became the conduit. The connection between the kids and their families, between the disease and the media. It was organic, as if a new gene entered my body and took over as this revised version of myself.
Not only did people not know kids got arthritis, many doctors didn’t know how to diagnosis this disease. The media didn’t want to focus on kids with an old person’s disease. The pharmaceutical companies only wanted to show grown-ups in their television ads for the disease.
So when CreakyJoints remodeled their website and asked me to be a part of it I said yes, and here I am.
My goals: a place where I can talk to parents and family members, to JA Kids and to doctors and teachers and anyone and everyone.
No, I do not have a child with JA. I have the grown up JA and because I have worked in television for over 25 years, I know how to get the facts, how to translate the information, how to talk so everyone can understand and now I am not just talking, I am shouting.
Juvenile Arthritis needs to be understood. It is not ok for it to take so long for a diagnosis. It is not ok for the media not to care about JA. It is not ok for insurance companies to withhold cutting edge medicines because of cost and legislatures to cut funding so they can balance their budgets. It is not ok for kids to be bullied and teased just because they don’t look sick.
And that’s why I’m here. To talk.
Listen and give me your feedback. Together we can and will make a difference.