Rose McGowan provides a breath of awareness for fatal lung disease
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For the last 22 years, actress Rose McGowan has entertained us on the silver and small screens. But playing Tatum in Scream or Paige on Charmed wouldn’t compare in difficulty to the role she played when her father was diagnosed with idiopathic pulmonary fibrosis (IPF).
“It was definitely my realest role,” says McGowan of being her father’s caretaker during his fight with the fatal lung disease, which causes scarring that makes it increasingly difficult to breathe.
“Breathing is so fundamental. So to have it bring you closer to dying every time you do it is horrifying,” she says.
After her father’s death five years ago, McGowan became involved with the Coalition for Pulmonary Fibrosis and Daughters of Pulmonary Fibrosis in the U.S. She recently teamed up with the Canadian Pulmonary Fibrosis Foundation (CPFF) for its IPF Awareness Month, which McGowan says is a feat in itself.
“When I became involved, there was hardly a website,” she says. “So to designate September as IPF Awareness Month is huge. I think people are asking what (IPF) is a lot more. There are so many causes people can pay attention to but this one is really important, especially since it is crossing age lines.”
Though about 15,000 Canadians are diagnosed and 5,000 die of IPF every year, little is known about the disease, including its origins. And while it generally hits those who are 50 or older, in 2011, Helene Campbell, a 20-year-old Canadian, was diagnosed.
Like many sufferers, Campbell, who appeared on Ellen after her organ-donor video went viral, was misdiagnosed with asthma. Other misdiagnoses include pneumonia or heart failure.
“It is common to be misdiagnosed because all the complaints sound like different things.” Symptoms include blue lips, dry cough, difficulty getting a full breath and uneasiness.
“I had never heard of it and neither had my dad; that’s why it was such a shock. I went with him to the pulmonologist after he was misdiagnosed for about nine months and the doctor just shook his hand and said, ‘I’m so sorry.’”
As part of its efforts, CPFF launched a social media campaign called Kiss IPF Goodbye. For every share of the organization’s videos and/or use of the hashtag #KissIPFGoodbye on Facebook, Twitter or Instagram, pharmaceutical company Boehringer Ingelheim will donate $5 for research.
Aside from educating the public, McGowan spends time with IPF patients and their caretakers. Having watched her father go from a “bear of a man who hiked trails everyday, was super active and a vegetarian” to being unable to walk up one stair caused a lot of confusion and frustration, she says.
“It was horrible seeing him go through it and it’s so awkward because I look back and there’s all these things I should have asked and said,” she says. “I would say to anyone who has a sick loved one, just talk. There are also support groups for both patients and caretakers because it’s exhausting.”
McGowan is realistic about her expectations for short-term IPF research and says she hopes to see a treatment developed to slow the progress of the disease.
“To help people live better lives while they are here is really my goal,” she says. “It’s one of those things where people are like, ‘I want to lend my voice and support’ but for me, it’s like, ‘I want to lend some reality.’ This is real and it’s scary and it hurts. I want that to stop.”