In our
Minute Papillon
podcast
!
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 was struck by a rare genetic disease, Leber's disease, for which there was 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
in the Éditions du Cherche-midi (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 AFM-Telethon event, scheduled for December 3 and 4 across France.
Wait a minute !
is an original
20 Minutes
podcast
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You can listen to it on all online listening applications and platforms, such as Apple podcast, Spotify, Deezer or Podcast addict for example.
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To write to us: audio@20minutes.fr
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