Canadian Teen Seeks EDS Treatment in the US

Brittany Crichton

Brittanay is another Canadian who is not getting the treatment she needs for her Ehlers-Danlos Syndrome. She is seeking more treatment in the US.

“Brittany Crichton looks battered.

Bruises dot the 23-year-old Hamilton woman’s body. She has a pronounced limp. Her shoulders dislocate so often that she puts them back in herself. Clumps of her hair have fallen out. She lives in constant pain. But she still fights.

Her battle is with the Ministry of Health to get coverage for last-hope surgery in the United States to stop the steady attack of Ehlers-Danlos syndrome on her body.

She has run out of treatment options in Canada for the inherited disorder that weakens connective tissue, causing extremely loose joints, fragile blood vessels and soft, stretchy skin that bruises easily.

“I thought I had no future,” said Crichton. “I’d like to have hope. My dream is to go to Paris.”

It will cost more than $100,000 for neurosurgery in Maryland on top of the $16,000 her family has already spent going to the Mayo Clinic in Rochester, N.Y., to get a diagnosis.

“We need to do something,” said mom Kim Crichton. “Things need to change.”

Her family says they have run up against a lack of knowledge about her syndrome in Canada to the point that they couldn’t get a firm diagnosis. They say services to manage chronic pain are woefully inadequate and the system is ill-equipped to treat young adults. Crichton is too old to be a pediatric patient but too young to be well suited for many adult programs.

“It’s an enormous issue,” said Sandy Smeenk, executive director of the Oakville-based ILC Foundation, which advocates for children and young adults up to the age of 29 living with chronic pain. “No one is looking at it.”

Crichton was a healthy teen until she woke up in May 2009 with a dislocated right shoulder that doctors couldn’t put back in. Every time it was treated, the shoulder would soon dislocate again. By November, her hips were so loose it was difficult for her to walk. And by March 2010, her left shoulder was dislocating.

She saw a long list of specialists in Hamilton, London and Toronto: orthopedic surgeons who did three surgeries, a neurologist, cardiologist, gastroenterologist, geneticist, rheumatologist, hematologist, and those in physiotherapy and rehabilitation.

Doctors suggested it was Ehlers-Danlos syndrome, which is diagnosed in about one in 5,000 people and ranges from mild to life-threatening. But there appeared to be no way to get a firm diagnosis despite a number of tests.

Some doctors dropped her immediately while others tried to help, without success. One orthopedic surgeon who moved his practice to Nova Scotia continued to fly back periodically to see her.

But she languished on waiting lists for months before finally getting into a pain management clinic in July 2011, only to be told they couldn’t help her. By this point, she’d started fainting.

“I was so frustrated,” said her mom. “We waited for this.”

By October 2011, her family was desperate for answers and treatment as they watched Crichton getting worse. They turned to the United States. First, they paid out of pocket to go to the Mayo Clinic where she was officially diagnosed with Ehlers-Danlos.

“It was a huge relief,” says Crichton. “I started crying. I felt like finally someone was going to recognize this.”