Toulouse. Suffering from Charcot’s disease, this artist continues to paint … with her eyes
Through Anthony Assemat
Published on
It is a lesson of tenacity, of will, in spite of the disease and the heavy obstacles which are presented to oneself. Quite simply, a lesson in life.
When diagnosed with Charcot’s disease Karine Brailly in March 2014, it is like a small death that interferes in his being. To pay this painter passionate about sport, former fitness teacher, the first evidence was to no longer be able to satisfy his passion.
First symptoms in 2013
The first symptoms appeared in March 2013. “At first, I just felt a lack of my right hand. I continued to paint with my left hand. After being diagnosed, I no longer start painting ”, explains Karine Brailly to Toulouse news.
What is Charcot’s disease?
Charcot’s disease, also called Amyotrophic Lateral Sclerosis (ALS), is a neurodegenerative disease of the motor neurons in adults. It is the third neurodegenerative disease behind Alzheimer’s and Parkinson’s. The causes of the disease remain unknown, but 90% are sporadic and 10% have a genetic origin.
Each year in France, more than 2,000 people are diagnosed, and the sick are getting younger and younger. Symptoms are characterized by progressive paralysis of the muscles in the arms, legs and throat, resulting in the inability to eat, walk and speak. The five senses are not affected and the person keeps his head.
To date, there is no cure for the disease.
With its association Tous en Selles against ALS, it promotes research on the intestines-brain axis. “This is a very promising line of research in other neurodegeneratives, which has not yet been studied for Charcot’s disease. This includes the study of the microbiota and its impact on the brain,” explains Karine Brailly.
A surge of solidarity
The momentum of solidarity to begin with a caregiver who helps him to hold the brush. But it didn’t last. “At the time, I knew painting classes in Portet-sur-Garonne. My students then created an association to help me finance an eye order. It was possible to continue painting, ”she recalls.
The eye control that changes everything
This eye command will change the course of events. It is thanks to her that Karine, who hears the conversations, can express herself.
How does this eye control work? This is the Cenomy company who markets it. A small USB stick is limited to your computer screen (and can also be attached to a tablet, for example). This small box is designed to control the digital environment with the eye, like mouse and keyboard peripherals, thanks to sensory stimulation. Once installed, Karine can use the computer and click on the keys from a distance, thanks to her eyes. “And to paint, I use the Artrage software. I create .jpg images there, order them and print them, ”explains the artist from Lomme, in the North.
The example of Pone, also
In the region, Karine, who creates from her apartment on the route de Seysses and is assisted by six carers who take turns every week, is not the only artist suffering from Charcot’s disease to continue to exercise her talents with his eyes through eye control. Pone, the former member of the Fonky Family, released a mini album and even participated in the closing ceremony of the Tokyo Paralympic Games with a mix. And this, from his home in Gaillac, in the Tarn.
Love of rugby and movement
Before the illness, Karine Brailly had many favorite themes like rugby, bullfight, dancing and horse riding. “I like anything that is in motion,” she says. With the eye control, rugby is the only sport she manages to paint and she manages to achieve magnificent portraits, like that of the inevitable Claude Nougaro. His current models, especially in the abstract field, are called Detine, Emmanuel Michel, Pier Toffoletti, Formerly and SilVeira.
“I would like to travel the world to exhibit”
Arrived in Toulouse in 2002 – “it is a warm city” – the artist had lived nine years in Guadeloupe and applied the love of movement in his life. She put down suitcases and her brushes all over France and even abroad, as far as China.
She does not dream of the star gallery or the fashionable place to exhibit her works. “I would like above all to heal and travel the world to exhibit,” she concludes.
>> Report in 2012, before his illness, in the magazine “Rencontres à XV” <
She exhibits her paintings at the Lalande animation center
From November 3 to 25, 2021, Karine Brailly is exhibiting around twenty paintings at the Lalande animation center, north of Toulouse. And this, within the framework of the Town & Handicap Meetings. The opening of this exhibition, entitled “My eyes for only brushes”, will take place on Tuesday, November 18, 2021 from 6 pm. An audio and video installation, an associative stand and a mini conference will be organized.
A portion of the proceeds from the sale of paintings will be returned to various associations such as Tous en selles contre le SLA, which she was founded with four other people.
239, avenue de Fronton.
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