A Brant County family is continuing to push the province to cover treatment for Ehlers-Danlos syndrome.
Erika Crawford, 19, was first diagnosed with EDS in 2012.
It’s a rare genetic condition that can cause a body’s connective tissues to degenerate.
While there is no known cure, treatment is available to help alleviate some of the symptoms.
When Crawford’s family sought treatment at Hamilton General Hospital, they were told to visit a doctor in Maryland.
“If the Canadian doctors are referring us to (the United States), then there must not be specialists in Ontario,” father Darren Crawford said in a recent interview.
The administrators of Ontario’s health care system seem to disagree.
Crawford’s parents estimate that treating their daughter has cost $185,000 since her diagnosis.
About $100,000 of that has been raised through community fundraisers.
The province claims treatment is available in Ontario, and therefore won’t pay for any of Crawford’s care in Maryland.
Last month, Crawford went stateside to undergo spinal fusion surgery – something designed to combat her increasingly frequent collapses.
“I was deteriorating to the point where I just couldn’t stand or walk for more than a couple of minutes at a time,” she said.
Dr. Sudhir D’Souza is a London-based physician.
He doesn’t treat Crawford, but does have three patients with EDS.
All of them, he says, are having trouble finding care in their home province.
“Getting someone in Canada to say ‘Oh, I can do this too’ is very, very difficult if they don’t have that level of experience,” he said.
In comparison, he says, the Maryland-based doctor who treated Crawford has about 1,000 patients with EDS – meaning more experience treating the disease.
