A Huntsville woman in her 60s is in desperate need of medical care she can’t access near home or in surrounding areas.
Tiffany Page is living with Muckle-Wells syndrome, a rare genetic autoinflammatory disorder. According to the National Library of Medicine, it causes recurring episodes of fever, rash, joint pain, severe headaches and fatigue, often starting in infancy.
“I have suffered all my life,” she said. “I just need help. I'm in agony.”
Over time, the disease can lead to complications like hearing loss, eye inflammation, and kidney damage due to chronic inflammation.
In addition to these symptoms, Page experiences seizures, frequent falls resulting in broken bones, and constant infections. She recalls a time, just six and a half years ago, when she was a runner, biker and yoga teacher.
Now, even simple tasks bring her agony.
For years, Page has tried to get medical assistance from doctors and government offices, only to be met with rejection.
“No doctor in Huntsville would touch me,” she said.
One physician at South Muskoka Medical Centre in Bracebridge finally took her case and managed to refer her to specialists across Ontario.
But while she needs a genetic specialist, she has yet to be referred to one close to home. Instead, there are doctors in Ottawa who may be able to help — if she can find a way around the bureaucratic barriers keeping her from their care.
“And maybe I'm too sick for them to help me, but they haven't given me a chance,” she said. “I haven't been able to see these genetic doctors … because I don't live there? That's not right.”
She has also been turned away from major hospitals like Women's College Hospital, Toronto Western Hospital, Sunnybrook Health Sciences Centre, and Hamilton Health Sciences Hospital.
Bureaucracy over compassion?
Page said the current provincial government appears to be focusing on the wrong priorities, overlooking the health care infrastructure and support systems needed for aging adults who require extended medical care.
“That's the backlog of the medical system. So why aren't (government officials) putting more money into educating people?” Page asked.
Through her primary physician at South Muskoka Medical Centre, she has been working with MPP Graydon Smith’s office to try to gain access to care in Ottawa.
Representatives from the local Progressive Conservative office have been in communication with the Ottawa hospital about waiving restrictions, but progress has been slow.
“I need somebody to fight for me to get this medical care,” she said. “I would like to sit down and talk to Graydon personally about what I've gone through over these years.”
They promised to call her as soon as possible with some kind of plan – something she has heard before, with nothing to show for it.
Despite her deteriorating condition, Page hesitates to go to the emergency room. She fears that doctors, unfamiliar with her rare disorder, could prescribe something that could worsen her condition.
“I'm afraid to go to emerg because they don't know my illness,” she said. “I have allergies to medications, so I need to see a specialist.”
Beyond her medical challenges, Page is also struggling financially. She is transitioning from disability benefits to a lower pension, making it difficult to afford her home and basic necessities. Once her pain becomes manageable and her health is under control, only then can she focus on other aspects of her life.
For now, she remains stuck in a cycle of waiting — and hoping — for help that may never come.
Megan Hederson is a Local Journalism Initiative reporter covering Huntsville and Lake of Bays for MuskokaRegion.com. The Local Journalism Initiative is funded by the Government of Canada.