The one who was Esméralda in “Notre-Dame de Paris” celebrated her 25th career on stage last December.
At the same time, she was treating a rare illness that caused her to lose her left eye.
The singer spoke this Sunday in Sept à Huit about this fight that she has been waging for ten years and which has saved her from being completely in the dark.
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Seven to eight
“It all started in April 2013, I came back from Russia where I had worked a lot and I woke up one morning with a curtain literally in front of my eyes, not understanding what was happening to me,” says Hélène Ségara straight away, as if to set the scene. “From there, everything happened, I had implants in my eyes and a total of around twenty operations. So I was more or less stabilized. And then, two years ago, everything changed. changed again, I realized that I was really losing one of my eyes and that there was nothing working anymore”she continues opposite Audrey Crespo-Mara, in the video above.
Mockery on social networks
The disease then gained ground, says the singer: “I couldn’t see my phone screen anymore, I couldn’t read anymore.” She realizes with horror that she is losing both eyes. “At that time, I had no other solution than to be hospitalized, to be infused and to have daily care to try to urgently slow down while waiting to find a treatment”, she testifies. But the hardest part is that Hélène Ségara doesn’t even know what she’s fighting against. “At first, we said it was a tumor, then we said it was multiple sclerosis. I heard all kinds of things. We looked for everything related to autoimmune diseases, I ‘have done lumbar punctures, biopsies, but actually, I still don’t know what I have,’ she assures.
The only certainty was that she was unable to save her right eye. Not to mention the side effects linked to heavy treatments based on cortisone which caused him physical changes. And at the same time, derogatory messages on social networks. “It was 1000 mg cortisone infusions. I arrived, I was normal and when I left, I was popcorn. But above all, from the moment we lose our sight, our eye desperately searches for the light, so there are a few television shows where I found myself with squints that I couldn’t control and on the networks, people are so violent (…). for a while, I went abroad because I didn’t want to be followed and harassed”, she admits.
I want to see everything, watch everything as long as I can.
Hélène Ségara
But how can you live for ten years with an unknown illness? “I put things into perspective”she blurted out, before adding: “the present today – this is undoubtedly the lesson of what is happening to me, I want to live it intensely. I want to laugh a lot, I want to enjoy every moment, I want to love a lot, I want to eat delicious things , make delicious food for the people I love, I want to see everything, watch everything while I can”,. she says.
The present is also a treatment that doctors have found to stabilize his vision. “Initially, it was infusion treatments that could only be given in the hospital and now, it is injections, which makes me mobile. That is, I can travel with my syringes and my medicationshe says.
The opportunity for the singer to return to the stage and even to be on tour with the young generation of musical comedies where she performs the great classics, first and foremost “Notre-Dame de Paris”. A way to reconnect with Esméralda who made him famous 25 years ago. “It was overwhelming for me because I said to myself: ‘every fight is worth living’. I believe that until my last breath, music will be part of me and will surely be one of the deep sources of my energy”she believes.
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Hélène Segara, a “mental of steel” in the face of illness
Today, Hélène Ségara thinks she is a bit of a miracle. “Within a few days, I lost both of my eyes. When I started the treatment I am currently having, I was losing 1/10th per month and I had 3/10ths left. So, I had three months left to go. find one of the treatments that works So, we tried one, then another, and then when this one arrived, I was told that there wasn’t much back and I said. : ‘this one will work’. They looked at me like I was crazy. I think I had to hold on to it absolutely.”she admits.
Paradoxically, the illness also “open your eyes”, like she says. “I think I was a bit of a Mother Teresa to a lot of people around me who thought I was a bottomless pit, meaning there were people who called me at any time of the day or night (…) I wanted to surround myself with people who not only take, but who also know how to give. And I took a lot of time to do that. to understand”, she concludes.
