A man born with cystic fibrosishas shared that he would have stayed “completely unaware” of his life-threatening illness if it hadn’t been for fertility issues that resulted in his diagnosis during his 40s.
Simon Wade, a sales advisor fromDevon, stated that his life “was forever changed” in February 2023 after he was diagnosed with cystic fibrosis at the age of 41.
Cystic fibrosis (CF) is a hereditary disorder that significantly impacts life expectancy, leading to the accumulation of thick, sticky mucus in the lungs, digestive system, and various other organs.
Mr. Wade has experienced respiratory issues since birth, and had previously been diagnosed withasthma, and never imagined it could be anything else.
It wasn’t until he and his partner, Hannah, faced difficulties in getting pregnant that he had additional tests done. These results showed “DNA markers for cystic fibrosis,” which was a “huge surprise.”
Mr. Wade, who is 44 years old, is not currently on any medication and has been told by physicians that physical activity is his most effective treatment.
As a result, he chose to participate in the TCS London Marathon in April of this year, successfully raising almost £3,000 for the Cystic Fibrosis Trust.
Now, having welcomed his “cheeky and smiley” daughter Ava into the world with the assistance offertility treatment, Mr. Wade is committed to increasing awareness about CF and “seize the day and enjoy life.”
“If my partner and I hadn’t been attempting to conceive, I would still be unaware,” he stated.
It made sense to me when I received the diagnosis, but at the same time, you wonder how many other people are out there without that diagnosis?
My condition was diagnosed as asthma or reactive airway disease, but in the end, it was caused by cystic fibrosis.
But I strongly believe that everything occurs for a purpose.
Mr. Wade stated that he has consistently been “healthy, physically fit, and active,” and he likes to engage in athletic activities.
He mentioned that he was informed by physicians since childhood that he had asthma, but it is only now that he understands he was “clearly misdiagnosed all along.”
“I experienced trouble breathing occasionally and I would constantly cough up mucus each day, but I had no understanding that these signs were related to cystic fibrosis,” he stated.
As stated by the Cystic Fibrosis Trust, individuals are born with cystic fibrosis and it is not something that can be acquired later in life. This disorder impacts over 11,000 people across the United Kingdom.
CF is typically identified soon after a baby’s birth using the heel prick test, which is also referred to as the newborn blood spot screening.
This exam was first implemented throughout the UK in 2007, meaning Mr. Wade did not have it at the time of his birth.
However, Ava took the test and does not carry the CF gene.
As per the UK Cystic Fibrosis Registry’s 2023 annual data report, the average age at death for individuals who passed away with CF in 2023 was 46, whereas it was 32 in 2018.
Furthermore, the median projected lifespan for newborns today has risen to 64.1 years. Mr. Wade mentioned that he feels “fortunate about the progress made in medical treatments.”
He has undergone physical therapy training to assist in expelling mucus, but he mentioned that he currently doesn’t require any medication because of his level of physical fitness.
“Since I’ve maintained my fitness and health, the doctors essentially said, ‘Look, whatever you’re doing, it’s effective,’ and I just need to keep it up,” he stated.
But the instant I cease exercising, they might have to reconsider if they should begin prescribing medication.
That’s why I decided to push myself with a challenge and run the London Marathon.
Supported by the Cystic Fibrosis Trust, he aims to keep increasing awareness and donations to enhance the quality of life for individuals affected by CF.
“Being Ava’s parent has provided me with a completely new perspective, as I wish to be present for her for as long as possible,” he stated.
My mother died of cancer when I was 11, so having Ava has made me more committed to being present for as long as possible.
My perspective with Ava is to embrace each day together and cherish every moment, while observing her growth and development.
He stated, “With CF, it’s about spreading awareness and ensuring that people understand they don’t have to endure this alone.”
As more individuals with CF live longer, the Cystic Fibrosis Trust is seeking support tofund vital research.
To learn more, go to:cysticfibrosis.org.uk.
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