10/29/2015 10:40 EDT | Updated 10/28/2016 05:12 EDT

Ontario To Address 'Bizarre Catch-22' For Patients With Rare Diseases Who Must Go To U.S. For Treatment

When no Ontario specialist can be found, patients must travel to the U.S. where they can be ruined by million-dollar medical bills.

Erika Crawford/Facebook

TORONTO — Health Minister Eric Hoskins says he's been moved by the stories of two young Ontario women with a rare disorder and wants to find ways to help them medically and financially.

Erika Crawford, 20, of Brantford and Brooklyn Mills, 22, of Oakville, both suffer from Ehlers Danois Syndrome, or EDS, a genetic defect in the connective tissue that provides supports to many body parts including skin, muscles and ligaments.

It leads to severe dislocations, chronic pain, heart problems, mobility issues, lost vision, severe fatigue and a poor quality of life, and is so hard to diagnose that few doctors have the knowledge to properly treat patients.

"I don't think there's ever a day when I don't feel like crap," a sobbing Crawford told a news conference at the Ontario legislature.

"I'm just kind of in a nightmare waiting to wake up every day, and I honestly can't remember the last time that I ever had a day when I was OK, when the day was fine with no complications," said Mills.

Hoskins met with the two women and their parents Wednesday and said he created a panel of experts to look at ways to help them and others with rare diseases like EDS. It would also look at how to help them financially.

"I was moved by and concerned by their stories, particularly because they felt they were not able to receive the services they need in Ontario, and they felt let down," he said. "No families should have to go through the challenges that these families have gone through."

Hoskins said the two families agreed to sit down with the expert panel, and he plans to attend the meeting.

"I feel it is critically important that the working group, at the earliest possible moment, in my presence, meet with these families and hear their stories and the challenges they face."

Darin Crawford, Erika's father, said she's seen 35 specialists, spent hundreds of days in hospital and had countless emergency room visits, but they haven't been able to find a single doctor in Ontario with the expertise needed to treat her.

"I've lost track of how many times my daughter has been labelled psychosomatic because doctors in Ontario do not have the necessary training or experience to treat this disease," he said. "It's bad enough having such a horrible, disability disease, but to have doctors tell you you have manifested the symptoms in your head is just cruel and inhumane."

Watching hospital staff Google EDS to find out what it is doesn't inspire much confidence, and the expertise that exists in the United States needs to be taught to Canadian doctors, Crawford added as he choked back tears.

"Bring that knowledge back to Ontario so families like ours do not have to become financially ruined for the health care we have paid dearly for," he said. "The stress and financial hardship our family has endured over the last five years has been devastating."

Both women have had to travel to the U.S. for surgeries — in Brooklyn's case 40 different operations — and their families have racked up huge bills because OHIP won't cover their out-of-province medical costs.

"It took nine years to get a diagnosis," said Rebecca Mills, Brooklyn's mother. "She's had countless surgeries in the U.S. but none of this has been funded by OHIP, and has left our family in financial ruin, not to mention the incredible emotional toll and stress we have had to endure."

The Mills have sold their house to pay their medical bills of more than $1 million, putting out $400,000 so far.

People like Erika and Brooklyn with EDS are caught in a "bizarre catch-22, where they can't get treatment in Ontario while the Ministry of Health fails to cover treatment out of the province," said Progressive Conservative MPP Michael Harris. He introduced a petition in the legislature calling for funding of out of province treatment for EDS patients.

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