By Quentin Marais
Published on 24 Dec 20 at 7:06
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If the year 2020 suggests that all stories end badly, Julien Secheyron is the perfect counterexample. Born in Toulouse (Haute-Garonne) in 2014 he suffered from Leber’s hereditary optic neuropathy, a disease that suddenly made him blinded. Thanks to a genetical therapy developed by a French company, the 43-year-old was able to regain sight.
Sudden loss of sight
He remembers it like it was yesterday. While attending a wedding, in September 2014, the one who “works in the world of consulting, to help business transformations” notes that he sees blurry. A few days later, he goes to the ophthalmologist. “I couldn’t read no more letters of the left eye. ”
I returned to Paris, I was given other additional examinations. They didn’t quite understand what was going on. They thought of optic neuropathy. It happens, and then we regain our sight. During a conversation I said that one of my cousins had Leber’s disease. The ophthalmos all froze and I was sent to Doctor Catherine Vignal.
In October 2014, the neuro-ophthalmologist at the XV-XX Hospital in Paris, “diagnosed Leber’s disease. She told me that I was going to lose my sight suddenly in the other eye, and that it was irremediable, since there was no no treatment ”. Julien Secheyron then explains his daily life at the time. “We are blind, but we keep a kind of veil, where we sees trouble All the time “.
A call that changes a life
In just three months, Julien Secheyron, then aged 37, saw his daily switch. “I couldn’t go to the bank, type on my computer, drive anymore. I no longer saw my face, what I ate, ”he confides. It’s a change of life, brutality when it happens ”. Dark hours, until this day in April 2015. On vacation in Guadeloupe, the Toulousain receives a call. He hung up.
It was Dr Vignal who told me “I have an opportunity, we are going to start the studies, in a protocol phase”. I accepted, what do I have to lose? Three days later, I was in Paris, at the hospital, I signed the protocol, and I was injected. It’s one and only one injection in one eye, we stay one day, and the next day, we leave the hospital. Afterwards, we come back once a week, then every month for a check as part of the protocol.
He was then the “Patient number 15”. And a year and a half later, the results are there. “As I went along, I started to reread letters, I can see the red light very well, I can read the metro stations. At the kiosk, I can read the headlines, I can see what I am eating “. Julien Secheyron sums up this new change: “I see a tenth in the left eye and a half tenth in the right eye, which is phenomenal ”.
An expected drug authorization
In 2020, the man who has been living in Paris for 20 years considers that he is leading “a normal life in a few exceptions. I can no longer drive for example. But I took the plane from Toulouse to go to the capital, I’m going to do my shopping… ”. He speaks of a “double change of life: we lose everything and after, we find all the autonomy ”. His case is a hope for the 1,500 people who suffer from Leber’s disease each year.
Because the clinical study, led by Dr Vignal, and in which Julien Secheyron participated, is now complete. And after five years of hindsight, this gene therapy treatment, developed by the French company Gensight Biologics, has a temporary authorization for use.
The links forged by Julien Secheyron with Dr Vignal are still strong today. “When she has patients, she gives me their contact details and I call them to coach them. I explain to them how the injection will go, ”says the one who has created an association for a year. “This science of genetic engineering is the future. I hope that it will work. It is important to be a bearer of hope ”. Especially in 2020.
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