47Hélène Ségara spoke this Sunday, May 5 to Audrey Crespo-Mara in “Sept à Huit”, about this fight that she has been waging for ten years against her mysterious eye disease.
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! 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 again, I realized that I was really losing one of my eyes and that nothing was working anymore.. I could no longer see my phone screen, no longer read. At that time, I had no other solution than to be hospitalized, to be infused and to have daily care to try to urgently brake while waiting to find a treatment.. Initially, we said it was a tumor, then we said it was multiple sclerosis.
I've heard all kinds of things. We looked for everything related to autoimmune diseases, I did lumbar punctures, biopsies, but in fact, I still don't know what I have.. They were 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 eyes desperately seek light, so there were a few televisions where I found myself with squints that I could not control. And on the networks, people are violent (…). This is why I went abroad for a while because I didn't want to be followed and harassed..
Lhe present today – this is undoubtedly the lesson of what is happening to me, I want to experience 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 as long as I can. Initially, it was infusion treatments that could only be given in the hospital and now it's injections, which makes me mobile. That is to say, I can travel with my syringes and my medicines.
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
