CALGARY – Katrina Fontaine may still be recovering from major surgery on her brain stem and spine, but it’s actually the homestretch of what has been a long and stressful medical journey.
“I got down to 92 pounds and I couldn’t keep anything down,” recalls the 27-year-old social worker. “It was getting quite scary for my family. I was very, very sick.”
Fontaine was diagnosed with Ehlers-Danlos Syndrome two years ago. It’s a genetic connective tissue disorder that interferes with the body’s ability to synthesize collagen.
“All of my connective tissue is really, really weak,” she says. “I can bend my fingers completely back, everything in my body doesn’t have a lot of structure.”
An overly flexible cervical spine can put dangerous pressure on the spinal cord.
Fontaine began to experience a series of neurological symptoms, including blackouts, severe headaches, weakness in her limbs, loss of bladder function and problems swallowing.
At her most ill, she was put on a feeding tube as her weight dropped to just over 90 pounds,
“I went through the Canadian health system as far as I possibly could go,” Fontaine says. “I ended up having an MRI done in Alberta and it found there was nothing wrong with me.”
Unable to work, Fontaine was forced to move to Nelson, BC where she could be close to family.
Frustrated with her medical care, she turned to a specialist out of Maryland, USA.
Dr. Fraser Henderson is a neurosurgeon who has treated more than 500 EDS patients in the past decade.
“I see them from all over North America and Great Britain and elsewhere, Dr. Henderson explains from his clinic in Chevy Chase, Maryland. “By the time they hit their early 20’s, many of them are becoming disabled,”
Dr. Henderson recommended a series of three surgeries to stabilize Katrina’s spine. Out of pocket, it would cost her family nearly $200,000 – so they turned to Alberta Health for help.
“We applied to the out-of-country health services committee, and they sent the application back stating I would have to see an Alberta neurosurgeon,” Fontaine explains.
Fontaine spent the next several months trying to get an appointment with a neurosurgeon.
Finally, Dr. John Hurlburt, a neurosurgeon with the University of Calgary Spine Program, assessed Fontaine’s MRI’s and wrote a letter to Alberta Health stating surgery was not necessary.
The letter says, “In summary with the information provided to us, we feel that there is no clear indication for any of the surgeries proposed by Dr. Henderson. We are all concerned for Katrina’s health and as physicians wish to provide her with the best available care possible. However, in our opinion, the interventions proposed by Dr. Henderson are not only lacking indication, but could very realistically worsen her current clinical condition.”
“What Dr. Henderson is doing in the United States for EDS are operations we’re quite capable of performing,” Dr. Hurlburt tells Global News. “What’s different for Dr. Henderson is that he’s performing these operations for indications that most of us would not think are appropriate.”
According to the ILC foundation, a charity set up to support families with EDS, Fontaine’s case is not unique.
“We know of probably between 100 and 120 people diagnosed with EDS with major challenges who would have all gone down to the states for care,” explains Executive Director, Sandy Smeenk.
Smeenk says when it comes to EDS, there is gap in knowledge among Canadian specialists.
“Best practices don’t exist here,” she explains. “We’re working to provide support by bridging the gap, we have to fund more research.”
Last year, the ILC Foundation held a workshop for Canadian specialists to learn about EDS and surgical options available. Another conference is planned in Toronto this October.
Dr. Henderson says he disagrees surgery could make Fontaine’s condition worse. Most of his patients, he says, have been able to return to work and resume productive lives.
“I’ve done about 1000 surgeries and there have been about four complications which were relatively minor,” he says.
Fontaine is still recovering from her third and final procedure, but so far, she says she feels better than she’s felt in years. For the first time in months she is able to eat solid food and is less dependent on her feeding tube.
Last week, Fontaine learned her appeal to Alberta’s Out-of-Country Health Services panel was denied.
Family and friends are trying to help raise money to cover her medical bills.
CLICK HERE to help Katrina Fontaine