Man Discovers Life-Limiting Condition at 41, Raises Awareness

Simon Wade, a 44-year-old sales consultant from Devon, recently learned he has been living with cystic fibrosis (CF) since birth, a revelation that profoundly changed his life. Until February 2023, Wade had attributed his long-standing breathing difficulties to asthma. However, a series of fertility challenges led to further medical investigation, ultimately revealing his diagnosis.

Cystic fibrosis is a genetic condition that causes a build-up of thick, sticky mucus in various organs, particularly the lungs and digestive system. The diagnosis was a shock for Wade, who had always considered himself fit and healthy. “If my partner and I hadn’t been trying for a baby, I would still be none the wiser,” he stated. “It made sense when I was diagnosed, but at the same time, I wondered how many others are out there who don’t know their condition.”

Wade’s journey to diagnosis began when he and his partner, Hannah, struggled to conceive. After several months of trying without success, they sought medical advice. A semen analysis revealed Wade had no measurable sperm, prompting further tests, which confirmed he had the “DNA markers for cystic fibrosis.” This discovery was bittersweet, particularly given that a schoolmate of Wade’s with CF had tragically passed away at a young age.

Living with Cystic Fibrosis

According to the Cystic Fibrosis Trust, more than 11,000 people in the UK live with this condition. CF is typically diagnosed shortly after birth through a heel prick test, which was not available when Wade was born. He was only aware of CF through the loss of a friend during their childhood, a stark reminder of the condition’s severity.

Wade’s medical team expressed surprise that his condition had gone undiagnosed for so long. “When my GP read my records, she said, ‘How has this been missed?’” he recounted. The median predicted survival for babies born today is approximately 64.1 years, a significant increase from just a few years ago. Wade feels fortunate to benefit from advancements in medical treatment that have improved the lives of many with CF.

Currently, Wade is not on any medication, as his doctors emphasize the importance of maintaining a healthy lifestyle. He has been advised that exercise is his best medicine, which motivated him to participate in the TCS London Marathon in April 2023. His efforts raised nearly £3,000 for the Cystic Fibrosis Trust, contributing to awareness and research funding.

A New Chapter as a Father

In December 2023, Wade and Hannah welcomed their daughter, Ava, into the world, aided by IVF treatment. The heel prick test confirmed that Ava does not carry the CF gene, providing Wade with peace of mind. Becoming a father has shifted Wade’s perspective on life. He now feels a renewed urgency to enjoy every moment and ensure he is present for his daughter.

“Having Ava has given me a whole new outlook,” he shared. “I want to be there for as long as I can for her.” Wade’s own experience has inspired him to advocate for greater awareness of cystic fibrosis. He aims to ensure that others do not suffer in silence due to a lack of knowledge about the condition.

The Cystic Fibrosis Trust continues to seek support for vital research to improve the lives of those affected by CF. Wade’s story highlights the importance of early diagnosis and the need for ongoing awareness efforts. To learn more about cystic fibrosis and how to help, visit the Cystic Fibrosis Trust’s website at cysticfibrosis.org.uk.