A young Nova Scotia woman living with arthritis is speaking out about her challenges receiving care.
She says people face tough barriers if they don’t have a family doctor. This comes after a recent report highlighted gaps in care and research for those dealing with the chronic disease.
“I have pain pretty much every day of my life,” says advocate Jenna Kedy. “I think if I woke up one day and wasn’t in pain I’d be afraid.”
The 19-year-old has been living with juvenile arthritis and its painful symptoms since childhood.
After being diagnosed at age 11, she started receiving pediatric care at the IWK Children’s Hospital in Halifax. It’s the largest children’s hospital in Atlantic Canada.
“In the IWK I had a social worker in my rheumatology team, a physiotherapist, an occupational therapist, all these people that were on my side to help me with my day-to-day life,” she says.
Now the teen is making the transition to adult care.
Although she has a rheumatologist, she says it’s not easy because she doesn’t have a family doctor.
“Just because you have a chronic illness it doesn’t give you an extra push to get help,” Kedy says. “It’s really hard because I don’t have a family doctor, I don’t have that resting place.”
She adds the chronic disease impacts her immunity, making her more susceptible to illness, and worried about trips to busy emergency rooms.
The IWK’s Transition of Care Committee says the absence of family doctors is becoming more of an issue.
“In pediatrics, we have to think about what are the options for virtual care, where can we make sure people are on primary care lists, help them to figure out some ways to advocate,” says coordinator Jackie Pidduck.
The committee brings together youth, caregivers, and health-care providers. Its work includes research and providing resources to make the transition to adult care better.
“We’re thinking about the transition from the time that you enter into the IWK,” explains Pidduck. “We have an idea that you need to hopefully and eventually land in adult care.”
Meanwhile, in a recent report card by Arthritis Society Canada on the state of care, none of the Atlantic provinces received a grade higher than a “D.”
The highest score in Canada was a “C.”
The clinical practice lead with the society’s Arthritis Rehabilitation and Education Program says lengthy wait times can also have an impact when you’re transitioning to adult care.
“If there’s a huge gap between your last appointment with your existing rheumatologist and your new one, it can be really difficult,” says Erin Miller. “Perhaps your medication stops working properly and you need a change. Certainly, the medications are a huge piece of this.”
She says more awareness is needed when it comes to juvenile arthritis.
“It’s very invisible, this disease,” Miller says. “A lot of people don’t know that these kids are dealing with it. It can really come and go — they might have no symptoms one day and then a week later they might have a lot of stiffness and pain and fatigue. Even if they are on the right medications, they can still have these symptoms.”
Despite a tough battle, Kedy isn’t giving up hope for the future.
“I’m looking forward to hopefully — and maybe not in my lifetime — but working towards a cure,” she says.
“That’s the end of everything and helping people be able to live arthritis-free.”
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