In my high school class there was a girl who suffered from Cystic fibrosis (CF.) I remember she was lovely, often absent and, tragically, died before we graduated.
That, until recently, was the extent of my interaction with this childhood illness. That is until I read this article in a recent article of The Atlantic:
https://www.theatlantic.com/magazine/archive/2024/04/cystic-fibrosis-trikafta-breakthrough-treatment/677471/
To summarize, this once-devastating childhood illness, is undergoing a remarkable transformation. A transformation in an undeniably good context.
Traditionally diagnosed in early life, CF can affect multiple systems in the body, in what used to be a horribly limiting way. In the past, a diagnosis often meant a shortened lifespan, with few patients reaching their 30s! However, we are in the midst of a medical revolution which is rewriting the outlook and narrative for those living with CF, a revolution spearheaded by groundbreaking treatments like Trikafta, which is rewriting the narrative for those living with CF.
The data speaks for itself: advancements in CF treatment, like Trikafta's ability to thin mucus and improve lung function,are demonstrably extending lives. This is a testament to the tireless efforts of researchers and medical professionals who have dedicated themselves to conquering this disease. The future for those living with CF is no longer shrouded in darkness, but bathed in the hopeful light of a longer, healthier life.
The median age of death for CF patients more than doubled from a mere 26 years in 2008 to a remarkable 66 years in 2022. This incredible progress is further bolstered by a deeper analysis of age-related deaths within the CF population. In 2016, nearly half of CF deaths occurred before the age of 40. By 2022, this figure had been more than halved, with only around one in five CF deaths happening before 40.
What is of wonderful goodness and is extremely interesting is the quandary this new medicine has brought upon those who suffered so miserably with CF. Moving from a life where the terminal end was always in the near term, to a mostly normal life has allowed these people to re-evaluate their role, their purpose and their destiny.
The future for those living with Cystic Fibrosis is no longer shrouded in darkness, but bathed in the hopeful light of a longer, healthier life.
That’s a good thing.
My good friend Heather's parents founded the CF Foundation on Canada, with much help for many over many years. How wonderful that the hopefulness is bearing fruit of all kinds!