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Fertility Tests Reveal Devon Man's Cystic Fibrosis at 41

His case highlights missed diagnoses in those born before UK heel-prick screening began in 2007.

Overview

  • Simon Wade learned he had cystic fibrosis in February 2023 after fertility testing showed no measurable sperm and genetic markers, overturning decades of asthma labels.
  • Now 44, he manages his health through exercise and airway physiotherapy, with doctors advising no medication for the time being.
  • He ran the TCS London Marathon in April and raised nearly £3,000 for the Cystic Fibrosis Trust.
  • His daughter, Ava, conceived via IVF, was born in December 2023 and her newborn heel prick test confirmed she does not have the CF gene.
  • UK Cystic Fibrosis Registry data show improving outcomes, with a median age of death of 46 in 2023 and a predicted median survival of 64.1 years for babies born today.