Young arthritis sufferer hopes to one day be part of cure
WATERLOO — With the sun shining bright last Thursday, Amanda Dolson was excited to head outdoors and walk to school.
Like any 11-year-old she loves being active, but the short walk to Laurelwood Public School isn’t always possible for her.
Amanda was diagnosed with juvenile rheumatoid arthritis — one of several types of childhood arthritis— almost a year ago. While treatment has kept her symptoms at bay, she still experiences days when her achy, swollen joints limit her activity.
“I’m sore, I can’t get the exercise I need because it hurts too much just to walk to school some days,” said Amanda.
Her family has learned to be flexible with plans and to slow down when she can’t keep up with activities.
At school, Amanda has swapped playing outside during recess for volunteering for kindergarten classes.
“Going outside and running around and playing tag, she can’t really do that,” explained Tracy Mann, Amanda’s mother.
Despite all the adjustments Amanda has made in her life, the shifting symptoms are a huge improvement from what she experienced prior to the diagnosis.
Almost two years ago, Amanda came home from summer camp limping because her legs were sore. As summer turned to fall, the unexplained pain in her joints worsened and spread to other areas of the body, including her wrists.
“She was definitely not herself. She was tired, she was irritable, achy and we couldn’t put all the pieces together,” Mann said.
Amanda would spend her weekends in bed reading and had little interest in doing much else. Her doctor first assumed it was just growing pains. With constantly changing symptoms, it was difficult to diagnose anything else.
Mann’s mother suggested that the symptoms sounded like arthritis, which led her to look online for more information and discover it was a perfect match.
The family asked the doctor to run the appropriate tests and sought out the Arthritis Society for additional support. An assessment by an occupational therapist through the society signalled that arthritis was likely the problem.
Blood work revealed it was rheumatoid arthritis — a type more commonly experienced by adults.
After meeting specialists at SickKids Hospital in Toronto, Amanda was prescribed an immunosuppressant drug and non-steroidal anti-inflammatory drug.
“Once we got the proper meds, she was like a new kid. She wasn’t spending the weekend in bed, she was actually outside playing,” Mann said.
The drugs do have drawbacks, such as making Amanda more susceptible to catching colds or the flu. They’re also starting to lose their effect, but now knowing the diagnosis, the family is able to explore more options.
Through the Arthritis Society, the family has met other people who fighting the disease so that they can share their experiences with treatment.
More importantly, Amanda no longer feels like she’s in this struggle alone.
“I’m not the only one going
Once we got the proper meds, she was like a new kid.” — TRACY MANN, AMANDA’S MOM
through it,” she said.
Amanda is now speaking out about her illness because she wants people to learn about the 10,000 Canadian teens and children that have arthritis.
She said she wants to “help people understand that arthritis just isn’t an old person’s disease, to help people know that kids can get it too, to raise aware- ness.”
Already she has helped educate her peers and teachers about childhood arthritis.
Amanda and her family are also participating in the local Walk to Fight Arthritis on June 9 to raise awareness about the disease and to raise funds to support research.
Treatment for the disease has improved greatly in the last 20 years, Mann said, and she hopes a cure is viable in the next 20 years so that her daughter and other children won’t have to suffer forever.
“New medications are great but if we can find a cure, that’s even better, so that Amanda and other kids don’t have to go through this,” Mann said.