Families affected by a rare genetic disorder say they’re still not getting the help they need from the provincial government.
Ehlers-Danlos syndrome, or EDS, can cause a body’s connective tissues to degenerate. In its worst form, it can be fatal.
Erika Crawford was diagnosed with the disease in 2012.
Doctors at Hamilton General Hospital referred her to a specialist in Maryland.
Although Crawford’s family didn’t want to have to leave Ontario for treatment, they felt they had no other choice – and since then, have paid $185,000 in medical bills, much of which have been covered through community fundraising.
Darren Crawford, Erika’s father, says he’s aware of 120 Ontario families who have loved ones with EDS, and who can’t find treatment in the province.
“If they don’t have an EDS doctor here, they need to provide out-of-country treatment covered by OHIP,” he said in an interview at his home in Brant County.
That’s at odds with the position of the provincial government, which has long maintained that treatment is available in Ontario.
In a statement released Wednesday to CTV News, Health Minister Eric Hoskins said work is being done to connect families affected by EDS with that treatment.
“My ministry has identified specialists in Ontario with the necessary expertise to determine the best course of care, whether here or outside the province if necessary,” he said.
“I have asked my ministry officials to connect families to these physicians to ensure that patients are receiving the care they need.”
For her part, Erika Crawford says she’s hopeful treatment for EDS will eventually be covered by OHIP, no matter where it takes place.
“I hope that we’re going to make a change,” she said.
“I don’t want to see anyone else suffer.”
