Calling all teens:  Take charge of your arthritis on-line

July 2008

Dear Teens with Arthritis and Parents/Guardians,

We are writing to tell you about a new web-site we are developing and testing for adolescents (12 to 18 years of age) with arthritis and their parents, called ‘Teens Taking Charge: Managing Your Arthritis On-Line’. The goal of this web-site is to help adolescents learn how to manage their arthritis. Researchers have found that when people learn to better manage their disease, they can usually prevent their disease from getting worse.

Our study is sponsored by The Canadian Arthritis Network (CAN) and The Arthritis Society (TAS), and is being carried out at Sick Kids hospital in Toronto as well as in children’s hospitals in British Columbia, Nova Scotia and Quebec.

Prior to developing this web-site, we asked adolescents with arthritis and their parents about what they needed to know and do to manage their arthritis and what they would like to see on this web-site. Adolescents and parents felt it would be important to have adolescents and parents share stories of hope about common challenges they have faced dealing with arthritis and ways they have learned to better manage their arthritis.

We thought that you might be interested in writing a story of hope regarding a particular challenge you have faced in managing your arthritis and how you have overcome it. We have included examples below to give you an idea of what we are looking for in the stories.

If you are interested in writing a story, please send them to Navreet Gill, the study coordinator at the address below or at her email: navreet.gill@sickkids.ca . We hope that you will consider writing stories of hope for the web-site. If your story is selected, we will obtain your permission to use it and will only include your first name, age (for adolescents) and province.

If you have any questions or would like more information about the stories of hope, please feel free to contact Dr. Jennifer Stinson (co-investigator) at (416) 813-7654 ext. 4514 or Navreet Gill at (416) 813-7654 ext. 2332.

Sincerely yours,

Navreet Gill Clinical Research Nurse Coordinator Child Health Evaluative Sciences The Hospital for Sick Children

Toronto, ON
M5G 1X8 Phone: (416) 813-7654 ext. 2332 Email: navreet.gill@sickkids.ca

Stories of Hope

Example 1: Taking Medications

I have to take a lot of different medicines to help my arthritis pain, and some of these are pills and others are liquid. Sometimes, because my jaw is hurting, my mom will crush them up and put them in applesauce. When I have to take the liquid medicines, I always take the bad-tasting ones first so that I can get it over with! Something cool that I do, is pour a little bit of juice into a cup, and then put it next to my medicine and then go for it! I swallow the medicine real fast and then drink a little bit of the juice right after! It tastes better than the medicine, and it gets rid of the bad taste in my mouth. Taking medicines isn’t always fun, but I know I know it’s important if I want to stay healthy!

Example 2: Physical Activities

Once I started middle school and even in high school, some of the kids would ask me why it was hard for me to do some of the physical activities. They didn’t always understand that my arthritis could cause a lot of pain in my joints and limit my movement. They would say things like, “Why can’t you just hit the ball?” Sometimes this would make me upset and frustrated for not being able to do what they could. But I’ve learned to get over it, and accept things for the way they are. I’ve gotten used to my arthritis, and so I accept my limitations and have learned to work around them. I do this by thinking about my strengths and making the most of them. I might not be able to play baseball, but there are plenty of other things that I CAN do!

Here are some other challenges that you might want to include in YOUR story!

• Managing your emotions
• Dealing with injections
• Ways you cope with your arthritis
• Managing your symptoms
• How you deal with your stress or anxiety