A young Nova Scotian with arthritis talks about her challenges in receiving care.
She says people face serious barriers if they don’t have a family doctor. This follows a recent report which highlighted gaps in care and research for people with chronic conditions.
“I’m in pain almost every day of my life,” says attorney Jenna Kedy. “I think if I woke up one day and I wasn’t in pain, I would be scared.”
The 19-year-old has suffered from juvenile arthritis and its painful symptoms since childhood.
After being diagnosed at age 11, she began receiving pediatric care at the IWK Children’s Hospital in Halifax. It is the largest children’s hospital in Atlantic Canada.
“At the IWK, I had a social worker in my rheumatology team, a physiotherapist, an occupational therapist, all these people who were by my side to help me in my daily life,” she says.
The teen is now transitioning to adult care.
Even though 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 doesn’t mean you need help,” says Kedy. “It’s really difficult because I don’t have a family doctor, I don’t have a place to rest.”
She adds that the chronic illness impacts her immunity, making her more vulnerable to illness and worries about trips to busy emergency rooms.
The IWK Care Transition Committee says the lack of family doctors is becoming an increasingly problematic issue.
“In pediatrics, we need to think about virtual care options, where can we make sure people are on primary care lists and help them find ways to advocate for themselves,” says coordinator Jackie Pidduck.
The committee brings together young people, caregivers and health care providers. Her work includes researching and providing resources to ease the transition to adult care.
In fashion now
“We think about the transition from the moment you enter the IWK,” Pidduck says. “We have the idea that you have to hopefully and eventually land in adult care.”
Meanwhile, in a recent report card from the Arthritis Society of Canada on the state of care, none of the Atlantic provinces received a grade higher than “D.”
The highest grade in Canada was a “C”.
The clinical practice manager for the company’s arthritis rehabilitation and education program says long wait times can also have an impact when transitioning to adult care.
“If there’s a huge gap between your last appointment with your current rheumatologist and your new one, it can be very difficult,” says Erin Miller. “Maybe your medications are no longer working properly and you need a change. Certainly, medications play an important role in this process.
She says more awareness is needed when it comes to juvenile arthritis.
“This disease is very invisible,” Miller says. “A lot of people don’t know that these children face this problem. It can really come and go – they may have no symptoms one day, then a week later they may have a lot of stiffness, pain and fatigue. Even if they take the right medications, they may still experience these symptoms.
Despite an uphill battle, Kedy does not lose hope for the future.
“I look forward, hopefully – and maybe not in my lifetime – to working towards a cure,” she says.
“It’s the end all be all end all and helping people live arthritis free.”
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