Health
This 10-year-old woman advocates changes in cystic fibrosis at the national level.
Regina-
The Regina family with cystic fibrosis (CF) is hoping to raise awareness of the disease in anticipation of changes at the national level.
It’s a sequel.
Emmanuella McDougall, 10 years old, was born in CF, a deadly genetic disease that affects the lungs and digestive system.
It’s a sequel.
“You can’t look at me and say,” Oh, she has cystic fibrosis. ” Because no one knows just by looking at someone in CF.
It’s a sequel.
That is one of the reasons why she and her parents are trying to teach more people about this disease.
It’s a sequel.
“Then they can understand what our lives are like and what we do every day,” Emmanuella said.
It’s a sequel.
Twyla McDougall, Emmanuella’s mother, said managing CFs can be difficult.
It’s a sequel.
“She has been hospitalized seven times. Last time she just returned in February of this year. She had been in the hospital for 18 days,” Twyla said.
Emmanuella at the hospital (Courtesy of the McDougall family)
It’s a sequel.
Emmanuella spends 2-3 hours a day treating CF at home. She has learned to wash her hands frequently, wear masks to carry hand sanitizers, and stay away from others with CF and those who are showing signs of illness.
It’s a sequel.
“In the crisis of COVID-19, I think everybody is slowly understanding what CF looks like,” Twyla said.
More medicine
It’s a sequel.
The McDougall family also hopes that more awareness will lead to more access to illness medications.
It’s a sequel.
“We need a drug called Trikafta,” Emmanuella said. “To many people [with CF] Almost normal life, but not available in Canada. “
It’s a sequel.
Trikafta was approved by the FDA in the United States in October 2019, but has not yet been approved in Canada.
It’s a sequel.
McDougalls, along with Cystic Fibrosis Canada, is actively asserting approval for more CF drugs like Trikafta.
It’s a sequel.
“We are reaching out to our country and state decision makers,” Twiila said. “We are trying to make a great drug available here for CF patients.”
It’s a sequel.
On Sunday, the Cystic Fibros Canada’s Walk to Make Cystic Fibrosis History event was held to raise awareness and fund the disease.
It’s a sequel.
The events usually take place in groups, but due to COVID-19 restrictions, this year’s walk was effectively held.
It’s a sequel.
McDougall is still participating, just as he is participating every year.
It’s a sequel.
They say their plan is to continue to defend as much as necessary by reaching out to all levels of government, media and public. They hope Emmanuella will someday have access to medicines that will enable her to live a healthier life.
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