On Friday 21st June, colleagues across DHU will join Wear Yellow Day to raise awareness of Cystic Fibrosis (CF). Cystic fibrosis is a life-limiting, genetic condition without a cure. It dominates thousands of lives every day.
Beth Finn, our NHS 111 Clinical Site Manager in Oldbury, shares her personal experience with CF, a condition her daughter Isabelle has lived with throughout her life.
"I've been a nurse for 22 years, and I was a senior sister in A&E up until COVID. When the pandemic hit, I knew I needed a new job to keep Isabelle safe, so I joined NHS111 as a clinical advisor on 1st June 2020. They were incredible and so supportive," Beth began. "I then took the Clinical Shift Lead job and came back into the advice centre. Since last July, I've been a Clinical Site Manager. It's been an amazing journey, and I absolutely love DHU. They're the best people I've ever worked for, and they're so supportive and caring."
Isabelle was diagnosed with CF at 15 months old, Beth added, "I knew there was something wrong with my child, but it was misdiagnosed as bronchiolitis and other issues. Since then, our lives have been in and out of hospitals. Isabelle has significant lung damage and CF related diabetes and is now on insulin. She has to do a lot of nebulizers and chest physio every day. It's a tough disease and many people don't realise it's one of the most common life-limiting genetic illnesses. One in 25 people carry the faulty gene."
Beth told us that it is a struggle raising awareness for CF but has been a rewarding experiencing, saying: "In 2020, along with other families, we campaigned for modulator therapy medication to be rolled out in the UK. Thankfully, our campaigning was successful, and the therapy has changed our lives. I made a video of Isabelle after we got the medication, which went viral. We ended up on TV, were invited to Number 10, and raised a lot of awareness for CF."
Before the drug became available, Isabelle's daily routine was exhausting.
"She was having nine nebulizers a day and intravenous antibiotics every eight weeks. Sometimes, she couldn't climb the stairs without feeling breathless but, since taking Kaftrio, she's stopped coughing all the time. We've reduced her nebulizers from nine to three, and she now needs intravenous antibiotics only every six months. The medication has had a massive impact on her treatment burden and symptoms."
Beth highlighted the ongoing reality of living with CF, adding: "The reality for me has always been knowing that I might outlive my daughter. Some CF patients live long lives, but it's a constant roller coaster. One day you could be really well, and the next day you could be unwell. It's like living with a ticking time bomb."
Despite the challenges, Isabelle has achieved remarkable milestones. "She has just finished college and got a nuclear business management degree apprenticeship with Rolls Royce. She starts in September and has worked so hard."
"Raising money for CF research is crucial," Beth emphasised. "Although these new drugs are great, Isabelle still has CF and sometimes ends up in the hospital. It's been a difficult time for her, especially now that she's turned 18 and wants to live her life fully. We need continued research and support."
Join us on Wear Yellow Day to support and raise awareness for those living with Cystic Fibrosis.