'I have the will to live': N.B. woman needs double lung transplant
A New Brunswick woman suffering from sarcoidosis, a disease that limits your lung capacity, is in need of a double lung transplant.
Fourteen-year-old Lincoln Guest barely remembers his first concussion. He was only a toddler when he accidentally ran into his mother's bedframe, got a concussion and fractured his forehead.
"I didn't know what it meant," Guest said. "I just knew it was something with the head."
Since then the competitive hockey and football player has had two concussions. His most serious, and his only sport related concussion, happened in September during a pre-season hockey game.
"A kid blindsided me in open ice and my head hit the ice," he said. "It hurt a lot ... I was very dizzy all the time and it was hard to concentrate."
Guest's mom Andrea Guest noticed a personality change right away. She said he wasn't himself, was sad all the time and his mental health was struggling. That prompted her to seek help for her son at Ottawa's 360 Concussion Care clinic.
"It was totally 360 in that they looked at his nutrition and we gave him different supplements and they talked about mental health," she said. "They recognized that it was more than just his head was hurting and he felt dizzy."
That specialized concussion care clinic is part of a team of over 20 researchers from more than 15 centres across North America who have received a "groundbreaking" $5.4-million grant funding the TRANSCENDENT Research Program. The funding is being provided by the Ontario Brain Institute, a provincially funded not-for-profit organization that promotes itself as accelerating discovery and innovation, benefitting both patients and the economy.
“We know that concussion is a leading cause of debilitation for a growing number of people and efforts like TRANSCENDENT have the potential to accelerate solutions and transform care, said Dr. Tom Mikkelsen, president and scientific director of the Ontario Brain Institute.
The new program is a partnership with the CHEO Research Institute, the Ontario Brain Institute, 360 Concussion Care and researchers at a number of Canadian and American universities including Harvard, the University of California, Los Angeles and the University of Denver. The research team says it will identify indicators used to track concussion recovery and will use cutting-edge assessment technology from brain imaging to physiological evaluations and blood and saliva samples to help track the diagnosis, treatment and management of concussions across the patient spectrum.
"What this amazing opportunity is, it's a way for us to better understand how do people recover across the entire diversity of people with concussion? And what are ways in which we can better identify ways to treat people with the right treatment at the right time, with a precision tailored approach, using science to answer these questions," said Dr. Roger Zemek, a pediatric emergency physician and senior scientist at CHEO, in Ottawa, who is leading the project.
Canadian researcher Dr. Roger Zemek, centre, is seen smiling for a photo alongside some of his colleagues. Zemek, a pediatric emergency physician and senior scientist at CHEO in Ottawa, is leading a new research program dedicated to improving concussion care in North America. (Submitted)
Dr. Zemek says about 400,000 Canadians suffer from concussions every year but most of the research is done in silos. To change that, this partnership will allow the datasets on thousands of patients to be shared through the Ontario Brain Institute's research platform called Brain-CODE.
"Much of the research in the past has been focused on unique populations with concussions, either elite athletes, maybe the youth, maybe military, but it hasn't covered the whole spectrum of mechanisms of injury like motor vehicle collisions, falls, even intimate partner violence," he said.
Dr. Zemek is hopeful the research program, which is currently funded for 2.5 years, will help create new guidelines for concussion care and treatment that improve patient outcomes. The hope is the project will eventually be renewed for another 2.5 years.
"We want all our discoveries that we make in academia and in science to make it to the bedside and to the stakeholders that need it," he said.
As for Guest, he is now healed and back to playing hockey. While he admits he is still worried about the risk of another concussion, Guest said he is comforted to know that treatment plans have advanced drastically since his first concussion and that centres like 360 Concussion Care are available to him.
"I know that if I get another one there are good people who can help me," he said.
That reassurance extends to Guest's mom as well.
"I hope I never have to go through this again, but at least if we are ever in this situation again, I know that the most amazing care is available to us and I can't imagine the luck we had getting him, Dr. Zemek, as a doctor," Andrea Guest said.
A New Brunswick woman suffering from sarcoidosis, a disease that limits your lung capacity, is in need of a double lung transplant.
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