Yvonne Hughes, a 52-year-old comedian, has transformed her lifelong battle with cystic fibrosis into a platform for humor and storytelling. Hughes was born with Williams syndrome, a rare genetic disorder characterized by medical problems, including cardiovascular disease. She came through a difficult medical childhood of chips, towns, doctors and prescription drugs. Her inspiring story of persistence culminates at the Edinburgh Fringe. There, she introduces her dynamic show “Absolutely Riddled,” stemming from her life experiences of living with the disease.
Despite being diagnosed at age two, Yvonne’s parents never talked to her about her condition growing up. As a result, she was forced to live with the burdens of cystic fibrosis completely independently. Her weight never rose above the 7 stone mark, a testament to the physical devastation that the disease had wreaked on her body. Despite these challenges, Yvonne found solace in reading the Cystic Fibrosis Trust magazine, which fueled her dreams of attending camps advertised within its pages.
Hughes remembers that fateful day in her life when she KNEW her health was deteriorating drastically. To complicate things further, by 2018, her lung function went into freefall down to a mere 26%. As she was joining us, she was leaving her role as a public affairs officer at the Cystic Fibrosis Trust. This had the effect of redundancy. This was a major inflection point in her life, as she started to be more critical of her trajectory and what she wanted to accomplish.
In 2020, her life did an about-face after she began treatment with the new triple-combination therapy, Kaftrio. She describes this moment as a complete transformation: “My life changed a whole 180, literally overnight.” This complex breakthrough provided her with new means to take ownership over her health, restoring expectations she’d lost years ago. Once considered too sick for the lung transplant waiting list, Hughes now had the hope of a second chance—this time, with new dreams.
Hughes first connected with her partner Alan online almost four years ago. Their relationship developed at a time when Yvonne had started to feel much more alive. She reflects on past hopes of having children, admitting that as her lung function declined in her 30s, those dreams seemed increasingly out of reach: “I thought it would happen. And it never did.”
Even when speaking about the challenges she went through, Yvonne’s humor bursts forth. She has fully enjoyed life to the fullest through festivals, partying, and travelling as much as she could. “I used to breathe so shallowly that I had to take a – haa! – sharp intake of breath – to feel I was breathing,” she shares, illustrating both the struggles and the determination that define her journey.
There have been moments when Yvonne has wondered whether she would live or die. “Why at all? Why did cystic fibrosis come into being? Why have this weird disease that just kind of ruins lives?” These reflections reflect her real life pursuit of finding meaning in the struggle. Yet, she navigates these challenges with acceptance: “I’ve thought about ‘Why me?’ in a positive sense – that it was me because I could handle it. Or, I’m happy … because… this has shaped me to become who I am.
Over the past couple years, Yvonne has made a conscious effort to think for herself and tell her own story. She acknowledges the impact cystic fibrosis has had on her life trajectory, stating, “I couldn’t have a career because I would always get ill. I never moved social class. I always remained working class.”
As she prepares to take her show ‘Fat Rascal’ up to the Edinburgh Fringe, Hughes is on a mission. She hopes to show you the good, the bad, and the funny side of living with cystic fibrosis. “I’d rather have a full and short life than a long and unhappy one,” she asserts, embodying the spirit of resilience that defines her narrative.