Mother Victoria, British Columbia, with a rare, debilitating illness, is desperate for help.
But the 37-year-old woman said she had been waiting for surgery for years and was now considering medical treatment for her death.
“I am just suffering. So that’s … not living, “said Rosie Ashcraft in an interview with CTV News.
Ashcraft has something called Ehlers-Danlos syndrome, or EDS, a group of inherited diseases that affect connective tissue.
“It ruined my life,” she said, adding that it took years to get an accurate diagnosis.
For her, this means wearing a brace to keep her neck stable. She also has constant joint pain and feels weak.
“I’m in terrible chronic pain,” she said. “The pain is terrible.”
On bad days, she said, “I feel like an ax in the back of my head.”
She cannot work and spends most of her days in a medical bed at home.
Despite the pain medication, Ashcraft said her condition was deteriorating. She wants neck stabilization surgery.
“Surgery can reduce my pain. It will also protect me much safer, because it is dangerous to have an unstable upper neck, “she explained.
She accepts that nothing will “cure” her EDS, but believes that the operation will make her more comfortable.
But she said she had been waiting almost four years to see a neurosurgeon, and had not yet received an appointment.
CTV News contacted the Ministry of Health late Wednesday with questions about the Ashcraft case, but two days later have not yet received answers. However, CTV News asked some questions to the health minister at a public event on Friday.
“Sometimes when someone has a specialized need, it can be a challenge and these decisions about who and when to see a doctor or surgeon … are largely guided by doctors, for good reason,” said Adrian Dix.
“But that doesn’t mean there aren’t extraordinary challenges and our hearts are focused on anyone struggling through a serious condition.”
Although CTV News contacted the health ministry earlier and asked for an interview with Dix, he said he had not personally received information about the case.
He also said his government had made “deep efforts” to reduce the waiting time for the operation.
CTV News has also heard from other EDS patients and advocates in both British Columbia and other parts of Canada. Everyone says there is not enough support for patients.
“Canadians with these conditions, whether they live in British Columbia, Nova Scotia, Manitoba or Ontario, face the same challenges in accessing neurosurgical care,” Sandy Smink, CEO of The ILC Foundation, said in an email.
“Because of the neurological deficits they experience, including debilitating chronic pain, they are left to seek diagnosis and care abroad at their own expense.
Ashcraft was looking for an operation in the United States and was trying to raise funds, but said the cost was about $ 100,000.
She would like health care in British Columbia to cover the cost of the operation, as she could not get it here.
But with little hope, a struggling Ashcraft is considering MAiD.
“I don’t want my family to watch me suffer like this for years,” she said.
“Death still scares me, but what scares me more is that I’m starting to lose my fear of death,” she added.
The teenage sons of Ashcraft do not want to lose their mother.
“We don’t want that to happen and we have a lot of things we’ve planned over the years,” said Elliott Guedes.
“It’s upsetting some mornings when she’s really sad,” said her other son, Pearson Guedes.
“I tend to see her consume a lot of her drugs in a robotic way. I’m pretty sure she feels that way. “
The family said they desperately needed help.
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