Facing a Terminal Illness from Childhood

Diagnosed with cystic fibrosis (CF) at just six weeks old, Yvonne Hughes grew up believing she would not live past her teenage years. In 1992, at the funeral of a childhood friend with CF, she first realized the terminal nature of her illness.

“I had a kind of meltdown,” Hughes recalls. “That was probably the first time I thought: this thing is going to kill me.”

The genetic disease, which affects around 160,000 people worldwide, causes thick, sticky mucus to clog the lungs and digestive system, leading to respiratory failure and severe complications. For years, Hughes navigated hospital stays, chest infections, and the emotional toll of watching other children with CF die.

Living Recklessly While Bracing for the Worst

In her 20s and 30s, Hughes adopted a philosophy of “life’s for living,” travelling, attending festivals, and working full-time, even as her lung function steadily declined. By her mid-40s, her health was failing, and she faced the possibility of end-of-life care.

“I thought: I’ll see my days out with my parents, make memories and know I did well to get to 48,” she says.

The Drug That Transformed Her Life

Everything changed in 2020 when Hughes gained access to Kaftrio, a breakthrough medication for cystic fibrosis. Within hours of taking her first tablet, she experienced the “purge”—a release of years’ worth of mucus from her lungs.

“It turned my life around 180 degrees overnight,” she says. “I could breathe again without coughing. I could run, I could dance, I could cook standing up straight. It was a miracle.”

Finding Purpose in Comedy

With renewed energy, Hughes decided to explore new opportunities. A flyer for a stand-up comedy course at the University of Strathclyde caught her eye, and she enrolled.

Her first five-minute performance was a revelation. “Comedy was the one thing that was just for me,” Hughes explains. “I had never found anything for myself in life. Now, I have a community.”

She now performs regularly at clubs such as Monkey Barrel and The Stand in Edinburgh, turning her lived experiences into comedy with her one-hour show Absolutely Riddled.

A Life Worth Planning For

Today, at 52, Hughes is enjoying life with her partner Alan and has embraced the idea of a future she once believed she would never see.

“I can laugh without coughing or breaking a rib,” she says. “It is a horrible, horrible disease, but now I can live with it and not die from it. I’ll probably live to get my pension.”

FAQs: Yvonne Hughes and Cystic Fibrosis

1. What is cystic fibrosis?

Cystic fibrosis is a genetic condition that causes thick mucus to build up in the lungs and digestive system, leading to chronic infections and progressive lung damage.

2. How did Kaftrio change Hughes’ life?

Kaftrio, a breakthrough drug for CF, improved Hughes’ lung function almost immediately, allowing her to breathe freely and regain independence.

3. What is Hughes’ comedy show about?

Her show Absolutely Riddled is based on her experiences living with cystic fibrosis and the lessons she’s learned about resilience, mortality, and humour.

4. Does Hughes still have cystic fibrosis?

Yes, but the drug has drastically improved her quality of life, turning what was once a terminal illness into a manageable condition.

5. Where can you see her perform?

Hughes regularly performs at Edinburgh’s Monkey Barrel and The Stand Comedy Club, as well as at the Edinburgh Fringe Festival.

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