Simon Wade, 44, from Devon, was diagnosed after he and his partner Hannah were struggling to conceive
A man who was born with cystic fibrosis but remained undiagnosed until his 40s has revealed that he would “still be none the wiser” about his condition if it weren’t for his struggles with fertility. Simon Wade’s life took a dramatic turn in February 2023, when at the age of 41, he was diagnosed with cystic fibrosis (CF) – a life-limiting genetic disorder that causes a build-up of thick mucus in the lungs and other organs, and currently has no cure.
The Devon-based sales consultant had been dealing with breathing difficulties since his childhood, but as he had been diagnosed with asthma, he never suspected it could be anything more serious. It wasn’t until he and his partner Hannah faced difficulties conceiving that further tests were conducted – revealing that he had the “DNA markers for cystic fibrosis”, which came as a “massive shock”.
Now aged 44, Simon isn’t on any medication and has been advised by doctors that exercise is the best medicine for him. As such, he decided to participate in the TCS London Marathon in April this year, raising nearly £3,000 for the Cystic Fibrosis Trust charity.
Now a proud father to his “cheeky and smiley” daughter Ava, thanks to fertility treatment, Simon is committed to raising more awareness about CF and to “seize the day and enjoy life”.
“If my partner and I hadn’t been trying for a baby, I would still be none the wiser,” Simon said. “For me, it made sense when I was diagnosed, but at the same time, you think, how many other people are out there that haven’t had that diagnosis?
“Mine was classed as asthma, or reactive airway disease, but ultimately it wasn’t – it was all down to the cystic fibrosis. But I’m a firm believer that things happen for a reason.”
Simon, who has always led an active lifestyle, participating in sports and maintaining his fitness, was told from a young age that he had asthma. It’s only now that he realises he was “evidently always misdiagnosed”.
“I had difficulty with breathing at times and I would always bring up mucus every day, but I had no idea these symptoms were all to do with the cystic fibrosis,” he admitted.
According to the Cystic Fibrosis Trust, CF is a condition one is born with and cannot be contracted later in life. It affects more than 11,000 people in the UK.
Typically, CF is diagnosed shortly after birth through the heel prick test, also known as the newborn blood spot test. However, since this test was only introduced across the UK in 2007, Simon did not have this when he was born.
He revealed he’d encountered CF during his school years, as a classmate tragically passed away from the illness – though his understanding was limited back then. Those living with CF face vulnerability to various infections and diminished lung capacity, which can severely affect their overall health and quality of life.
“There was someone in my school who had cystic fibrosis and unfortunately lost their life to it when they were about 11 or 12 years old,” he said. “So I’d heard about it, but I didn’t really know enough about it.”
Simon received his official diagnosis in February 2023 whilst he and partner Hannah were attempting to conceive. He explained they’d been trying for several months, but “nothing was happening and they couldn’t understand why”.
Consequently, they sought medical guidance and Simon underwent a semen analysis test, which showed he had no detectable sperm. Following a referral to a geneticist and subsequently a cystic fibrosis clinic in December 2022, alongside additional tests, Simon discovered he had “abnormalities within (his) genes” and the “DNA markers for cystic fibrosis”.
He said: “When I was diagnosed, it came as a massive shock, especially knowing the kid that I went to school with and the fact that they didn’t live past 12 years old. So, for me to have lived my life up until that point, without any knowledge, it came as a shock.
“When my GP read my records and report, she said, ‘How has this been missed?’ She couldn’t quite believe that I’d been diagnosed at this point in my life.”
According to the UK Cystic Fibrosis Registry 2023 annual data report, the median age of death for those who died with CF in 2023 was 46, compared to 32 in 2018. Furthermore, the median predicted survival for babies born today has risen to 64.1 years – and Simon said he feels “lucky that there have been such advancements in the treatments”.
Simon has received physiotherapy training to assist him in clearing the mucus, though he explained he presently doesn’t require any medication thanks to his fitness levels.
“Because I have stayed fit and healthy, the doctors basically said, ‘Look, whatever you’re doing, it’s working’, and I just need to continue,” he said.
“But the moment I stop exercising will probably be a time where they’ll need to start reassessing whether they’ll put me onto medication. That’s why I wanted to set myself a challenge and do the London Marathon.”
Through IVF treatment, Simon said he and Hannah were “lucky” to conceive on the first attempt. Their daughter Ava arrived in December 2023 and Simon said she underwent the heel prick test which confirmed she doesn’t carry the CF gene.
“The heel prick test is an amazing thing, but it came in too late for me and that’s why I was never diagnosed,” Simon said.
Simon said becoming a father has transformed his outlook and he wants to “enjoy as much of life as (he) can”. With backing from Cystic Fibrosis Trust, he hopes he can carry on raising awareness and funds to enhance the lives of those living with CF.
“Having Ava has given me a whole new outlook because I want to be there for as long as I can for her, I want to be around,” he said.
“My mum passed away from cancer when I was 11, so having Ava has made me even more determined to be there for as long as I can. My outlook with Ava is to seize every day with her and enjoy every moment, and just watch her grow and develop.”
He added: “With CF, it’s getting the word out there and making sure that people know they shouldn’t have to suffer alone.”
As more individuals are living longer with CF, the Cystic Fibrosis Trust is appealing for assistance to fund crucial research. For more information, visit cysticfibrosis.org.uk
