Last week I had the opportunity to speak at the kickoff event held at the Arthritis Society offices. There were a few members of the media present, along with Society sponsors, staff, some members of the medical community and lots of kids and parents.
I thought hard about what I should say. I wanted to bring home, especially to the media, the fact that juvenile arthritis is a serious, life-altering disease that causes real pain and disability, and can rob kids of things they love and leave them feeling isolated. At the same time, I wanted to offer some hope to the parents I knew would be there, because in 26 years with arthritis I've seen some truly incredible advances in the way this disease is treated and managed.
I started out by telling the audience that I am twenty-eight, and I've had rheumatoid arthritis for twenty-six years. I talked about some of the things I've lost to arthritis - my ability to play piano, many sunny days when I could have been running around outside, and even, for a whole year in my early teens, the ability to hold a pen or pencil (which was extra-complicated because nobody had laptops at that time!).
But I also talked about how far I've seen things come in 26 years. Yes, arthritis is still - and will probably always be - a part of my daily life. I still take a lot of medication, and there's a hip replacement somewhere down the road. But I'm worlds away from where I was as a child, thanks to drugs like Enbrel, regular physiotherapy through childhood, and a really fantastic rheumatologist.
I did cry for the children with arthritis who had also come to speak - a sweet four-year-old girl and a brave fifteen-year-old boy. I wanted to hug them both. After my talk, one of the Arthritis Society social workers asked if I would come and speak to a group of teen girls with arthritis that she works with. Seeing the kids made me realize how much I would love to do more with children with juvenile arthritis, so I was thrilled to be asked and can't wait to meet the girls.
It was a really great day. I wish I'd had the opportunity to meet other children with arthritis when I was younger, but this is the next best thing - maybe even better.