Onhandiscute is a new part of @talentEgal where every month we take a look at a different disability or illness. As part of our plan to raise awareness, in these articles, we’re giving you some background information on each of them.
Yesterday, February 29, was the national day against rare diseases, so we thought it was a good opportunity to revisit some of them with you.
This illness will certainly be fresh in some of your minds. Last year, we all became hugely aware of it following the viral trend for Ice Bucket Challenges! You might remember, it was the challenge where some of the world’s biggest celebrities would film themselves having a bucket of ice water poured over their heads! In the end, after just a year, more than 17 million people faced the challenge.
This illness is called Amyotrophic Lateral Sclerosis (ALS), also known as Motor Neurone Disease or Lou Gehrig’s disease, a reference to one of its more famous sufferers.
One of the biggest names in major-league baseball, Lou Gherig was diagnosed with the disease that now takes his name on his 36th birthday.
There are various terms to describe this group of neurodegenerative illnesses but, in essence, the muscles that control voluntary movements stop receiving signals from the brain, which as it progresses, causes atrophy of the muscles. As of now, there’s only one kind of treatment available, called riluzole. Its role is to reduce the amount of glutamate, a neurotransporter thought to be responsible for the illness.
Unfortunately, it remains a fatal illness that affects more than 120,000 people every year across the world. In France alone, there are approximately 5,000 to 8,000 sufferers where the prognosis after diagnosis is just 2 to 5 years. Nevertheless, it’s important to keep in mind that ALS develops differently in everyone.
With improvements to the therapeutic care available (physical, occupational and speech therapies), 20% of people make it to five years or beyond after their diagnosis, with 10% living for 10 years or more.
And that’s exactly what happened to Stephen Hawking, the famous astrophysicist, whose life story made it onto the big screen last year. Internationally famous, he has invested in innovative technology programs (his Connected Wheelchair 2.0, for example), helping people with disabilities, such as himself. Another inspiring story is that of Audrey Barbaud, a passionate traveler who, despite her disability, has continued to travel the world and share her adventures through her blog, ‘backpacks and wheelchairs’.
Currently, more than 170 projects have been launched to develop new therapeutic solutions. Technological innovations allow people with illnesses like ALS to continue to communicate, using Eyeswitch, for example, a transmitter activated by eye movements. The Ice Bucket Challenge helped to finance around sixty of these different projects.
If you also want to help support this research (but maybe stay dry at the same time!) then why not take part in the Evry Urban Trail on March 13.
Would you like to learn more about motor neurone disease?
Please take a look at the articles and studies available on the following websites: Talenteo / Ophranet / maladiedecharcot.org / ARSLA / les papillons de charcot