The Prix Paroles de Patients rewards Julien Secheyron for his book “You will no longer see”

It’s not the first time that a patient’s story can strike a chord, but that of Julien Secheyron is particularly inspiring. On June 26, the author received the 13th literary prize Paroles de Patients from the hands of Dr. Gérald Kierzek, medical director of Doctissimo, for his book You will no longer see. The story of a violent loss of sight at the age of only 30, due to an orphan disease, and the freedom returned thanks to gene therapy. What does this award mean to him?

What does your book You will no longer see, written in 2020 and awarded today?

Julien Secheyro: It’s a part of my life: at 37, I lost my colors, and a large part of my vision as a result of an illness, Leber’s optic neuropathy. I then learned of the existence of this orphan disease, and the announcement of my sudden loss of sight in less than 3 months, during an ophthalmological consultation at the Rothschild Foundation in Paris. My book tells about this and the patient journey that takes place, when you lose everything, when you can no longer withdraw money, send a message, when you no longer know what you are eating… It’s a total brutality.

But my book also tells how we can recover, how as a patient, we can also re-learn or simply learn to send a text message, call someone, answer a message, use a computer, shopping… to become independent again. Finally, I also tell the opportunity I had to enter an extremely innovative protocol undertaken by Genside, in April 2015, only 6 months after the onset of my illness.

The principle was a gene therapy which will make it possible to correct the defective gene via an injection. After a month or two, without much success, I started to review letters, then colors. Gradually, the vision returned. And knowing how to read the name of your toothpaste, what you eat or determine if the pedestrian light is green or red, is still a great experience. It is the book of a rediscovered freedom, in fact.

The prize was given to you in part for “your true, sincere and funny words”. Why did you choose such a “tone”?

Pathos is fine for some. But I believe that if I made this book in 2020 with my co-author (during the pandemic), it was not to make people cry. Even if the first chapters are brutal, I wanted to write this book for other patients, to tell them that there is hope, the progress of science, but also for caregivers who do not know what to do in the face of an invisible handicap, for the family, for medicine… We have to climb the slope as best we can, despite the difficulties and the barriers that exist. In this sense, pathos did not advance the thing, the cause, freedom or even medicine.

Your story highlights advances in medical research. Is it also this progress that you honor in your book?

Yes of course, especially in terms of genetics… Through what I have experienced, what I can listen to, see around me… today there is enormous progress, which is going at breakneck speed . Even if all patients and caregivers would like it to go even faster. Research remains the key and it is absolutely necessary that efforts be continued, in particular so that clinical trials are not reversed due to lack of funding. Because there is a lot of hope and things to be done through research.