Two young women with a debilitating rare disease known as EDS are finally getting help from Ontario’s Health Ministry after years of getting the runaround.
Health Minister Eric Hoskins said he has formed a “working group” to help the pair — among 100 people with EDS in the province — get the treatment they need here instead of heading to the United States at their own expense.
“I was moved by and concerned by their stories several months ago, particularly because they felt that they weren’t able to receive the services they needed in Ontario, and that they felt let down,” Hoskins, a family doctor, told reporters.
EDS is short for Ehlers Danlos Syndrome, caused by a genetic defect in the connective tissue that supports many body parts from skin to muscles and ligaments, making them prone to joint dislocations, chronic pain, blackouts, lost vision and serious bowel and bladder problems.
After meeting with 22-year-old Brooklyn Mills of Oakville and Erika Crawford, 20, of Brantford, Hoskins said he invited them to sit down with him and the working group to tell their stories.
Crawford, who is hooked up to an intravenous pain pump, said through tears she would love to live a day where she doesn’t “feel like crap” while Mills recounted being “frail and almost lifeless” in hospital for weeks at a time.
The two young women and their families held a news conference where the parents talked of “financial ruin” from maxing out their credit cards and re-mortgaging their houses to pay bills into the hundreds of thousands of dollars for treatment and surgeries from an EDS specialist in Maryland after having trouble getting proper care at home.
They are seeking reimbursement from the Ontario Health Insurance Plan.
Read more at the Source