March is Juvenile Arthritis Awareness Month!

Each year, the Arthritis Society spends the month of March doing everything it can to create awareness of the fact that kids get arthritis too.

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 cried when I wrote the speech, and I was worried I might cry when I spoke, but I didn't. A friend told me to think of the talk as empowering, and it really was. It was surprisingly freeing to tell a room full of people and TV cameras about my arthritis, when I so often feel like it's something I have to hide.

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.