How gene therapy revolutionized Julien Secheyron’s life

In our podcast Minute Papillon !, we are talking about a fall and a rebirth. There are days when you hear news that will change your life forever. Information, happy or unhappy, which cuts off existence, which makes people say that there was a “before”, then an “after”. Julien Secheyron experienced it one morning in October 2014, at the age of 37. He is told that he will lose his sight in three months. He is stricken by a rare genetic disease,
Leber’s disease, for which there is then no treatment.

It is a life which ends and another, with the handicap, which begins, which requires a lot of effort, of adaptations. Then comes another day, another news that will change the life of Julien Secheyron. Hope, with the entry into a research protocol based on gene therapy to regain part of his vision.

Why is Leber’s disease no longer an orphan disease?

Julien Secheyron wrote with Sophie Garcin You will no longer see at
Seeking-noon editions (18 euros), in which he recounts these years of pain and hope. He is the guest of this podcast. He tells the story of this “vertiginous fall” linked to this rapidly growing disease, and how he regained part of his vision thanks to gene therapy. Innovative therapies for rare diseases, highlighted by the event l
‘AFM-Telethon, scheduled for December 3 and 4 throughout France.

Wait a minute ! is an original 20 Minutes podcast. You can listen to it on all online listening apps and platforms, like Apple podcast, Spotify, Deezer Where Podcast addict for example. Feel free to rate us and leave a comment on your favorite platform. To write to us: [email protected]