Quebec girl battles rare disease with roots in 12th century Vikings
Johanne Roy, QMI Agency
First posted: Sunday, February 01, 2015 04:45 PM EST | Updated: Sunday, February 01, 2015 04:59 PM EST
MONTREAL - Suffering from a rare genetic disease that dates back to 12th century Vikings, Sabrina Lavoie-Gagnon displays the same fighting spirit of those ancient Nordics.
"I have ups and downs," the 17-year-old admitted. "These days, I'm in a good place. Since December, I've had a significant other, which helps on the emotional side. This summer, I didn't have to go to the hospital. I hope that continues."
Lavoie-Gagnon suffers from chronic atrial intestinal dysrhythmia, a genetic disorder whose origins date back almost 1,000 years, and which affects just 20 Quebecers.
The disorder's symptoms of slowed heart rate and chronic intestinal obstruction show in one in four cases where both parents of a child carry the defective gene. As a result of her disease, Lavoie-Gagnon has had four pacemakers installed and must be fed intravenously. Still, she's trying to make the best of a bad situation.
"Through the Make-A-Wish foundation, I took a seven-day cruise in the Mediterranean with my family in June 2012," she said. "I need four litres of liquid nutrition per day, so we had a lot of baggage. I had a paper proof, but I had to explain a lot to customs."
The disease was identified by two Quebec doctors, who traced its genetic history to Europe. One of those doctors, Philippe Chetaille, said that sufferers must deal with severe pain and an invisible disability.
"These people truly live a nightmare," he said, adding that he hopes to develop new diagnostic tools to identify the disease earlier and new treatments to combat the disease's symptoms.
Sabrina Lavoie-GagnonJean-François Desgagnés / QMI AGENCY
Quebec girl battles rare disease with roots in 12th century Vikings | Canada | N
Johanne Roy, QMI Agency
First posted: Sunday, February 01, 2015 04:45 PM EST | Updated: Sunday, February 01, 2015 04:59 PM EST
MONTREAL - Suffering from a rare genetic disease that dates back to 12th century Vikings, Sabrina Lavoie-Gagnon displays the same fighting spirit of those ancient Nordics.
"I have ups and downs," the 17-year-old admitted. "These days, I'm in a good place. Since December, I've had a significant other, which helps on the emotional side. This summer, I didn't have to go to the hospital. I hope that continues."
Lavoie-Gagnon suffers from chronic atrial intestinal dysrhythmia, a genetic disorder whose origins date back almost 1,000 years, and which affects just 20 Quebecers.
The disorder's symptoms of slowed heart rate and chronic intestinal obstruction show in one in four cases where both parents of a child carry the defective gene. As a result of her disease, Lavoie-Gagnon has had four pacemakers installed and must be fed intravenously. Still, she's trying to make the best of a bad situation.
"Through the Make-A-Wish foundation, I took a seven-day cruise in the Mediterranean with my family in June 2012," she said. "I need four litres of liquid nutrition per day, so we had a lot of baggage. I had a paper proof, but I had to explain a lot to customs."
The disease was identified by two Quebec doctors, who traced its genetic history to Europe. One of those doctors, Philippe Chetaille, said that sufferers must deal with severe pain and an invisible disability.
"These people truly live a nightmare," he said, adding that he hopes to develop new diagnostic tools to identify the disease earlier and new treatments to combat the disease's symptoms.
Sabrina Lavoie-GagnonJean-François Desgagnés / QMI AGENCY
Quebec girl battles rare disease with roots in 12th century Vikings | Canada | N