Actress visits Toronto to promote awareness campaign called Kiss IPF Goodbye after the progressive and fatal disease killed her father
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| U.S. actress Rose McGowan, who starred in the TV show Charmed, is in Toronto to promote an awareness campaign for idiopathic pulmonary fibrosis, a disease that killed her father. |
Rose McGowan remembers the exact words a doctor used to deliver devastating news to her father.
“I was with him in the hospital when the doctor shook his hand and said ‘I’m so sorry, because there’s really nothing I can do,’ ” recalls the actress, known for her lead role on TV’s Charmed.
He was diagnosed with idiopathic pulmonary fibrosis, a mostly untreatable lung disease, with unknown origins, which causes scarring that make it increasingly difficult to breathe.
A lucky few get lung transplants, but almost all die. In Canada there is only one drug with Health Canada approval, while another is under review. There are no approved drugs in the U.S.
Since losing her dad nearly five years ago, McGowan has tried to spread the word about this disease, which typically is misdiagnosed for months as asthma, pneumonia or heart failure. Symptoms include restlessness, a dry cough and blue lips.
Though it hits mostly older people, the disease does not discriminate. Canadians know about Ottawa’s Hélène Campbell, whose need for a lung transplant in 2012 created a global awareness campaign about the needs for organ donations. She was diagnosed with idiopathic pulmonary fibrosis at age 20, after being told for months that her problem was asthma.
“That’s the scary and hard thing,” McGowan says. “You are fighting an enemy in the dark basically, because you don’t know why your body is being attacked.”
McGowan has teamed up with the Canadian Pulmonary Fibrosis Foundation and is in Toronto Thursday to meet with patients and bring attention to the organization’s Kiss IPF Goodbye campaign.
For every share of their videos on Facebook or Twitter with the hashtag #kissIPFgoodbye, pharmaceutical company Boehringer Ingelheim will donate $5 to the organization for research.
A pair of blue lips on the website will slowly turn red as donations come in, says CPFF president Robert Davidson, who began the organization in 2009, after a lung transplant stopped the disease from ending his life.
About 5,000 Canadians die of pulmonary fibrosis each year.
“It’s the awareness that’s so important,” he says. “The more awareness we can create, the more people will go to their doctors and get an early diagnosis and get whatever treatments are available.”
An earlier diagnosis may also allow patients and their families more meaningful time to obtain resources and support.
“The disease that killed my dad kills so many people,” McGowan says. “It’s a horrible disease to die from. It’s a horrible, hard thing to watch.”
To see videos, read patient stories and watch the blue lips turn red, go to www.cpff.ca.
Source: TheStar.com
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