A man born with cystic fibrosis has revealed he would have remained "none the wiser" about his life-limiting condition had it not been for fertility struggles that led to his diagnosis in his 40s.
Simon Wade, a sales consultant from Devon, said his life "changed forever" in February 2023 upon receiving his cystic fibrosis diagnosis at the age of 41.
Cystic fibrosis (CF) is a life-limiting, genetic condition without a cure, causing a build-up of thick, sticky mucus in the lungs, digestive system, and other organs.
Mr Wade had suffered with breathing difficulties since childhood, was previously diagnosed with asthma, and never suspected it could be anything else.
It was not until he and his partner, Hannah, struggled to conceive that he underwent further testing. This revealed the "DNA markers for cystic fibrosis", which came as a "massive shock".
Mr Wade, now 44, is currently not taking any medication and has been advised by doctors that exercise is his best form of medicine.
He therefore decided to take part in the TCS London Marathon in April this year, raising nearly £3,000 for the Cystic Fibrosis Trust charity.
Now, having welcomed his “cheeky and smiley” daughter Ava into the world with the help of fertility treatment, Mr Wade is determined to raise more awareness of CF and “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,” he 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.”
Mr Wade explained that he has always been “healthy, fit and active”, and he enjoys participating in sports.
He said he was told by doctors from a young age that he had asthma, but only now does he realise 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 said.
According to Cystic Fibrosis Trust, people are born with CF and cannot catch it later in life. The condition affects more than 11,000 people in the UK.
CF is usually diagnosed shortly after birth through the heel prick test, also known as the newborn blood spot test.
This test was only introduced across the UK in 2007, so Mr Wade did not have this when he was born.
However, Ava had the test, and does not have the CF gene.
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.
In addition, the median predicted survival for babies born today has increased to 64.1 years. Mr Wade said he feels “lucky that there have been such advancements in the treatments”.
He has had physio training to help him bring up the mucus, but he said he currently does not need to take any medication due 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.”
With support from Cystic Fibrosis Trust, he hopes he can continue raising awareness and funds to improve 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.”
With more people living longer with CF, Cystic Fibrosis Trust is asking for help to fund vital research.
To find out more, visit: cysticfibrosis.org.uk.
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