Marie and Corentin, are a couple of globetrotters in their thirties who live in Autun (Saône-et-Loire). Marie has a disability, which is not obvious at first glance, but she is hard of hearing and visually impaired. She suffers from Usher syndrome.
Marie and Corentin have started a world tour. They had to interrupt it in March 2020, because of the health crisis but they want to continue to see the country. Even if it was primarily their shared passion for adventure, for the great outdoors, which triggered the idea of this trip, Marie’s progressive loss of sight also played a role. Enjoy, discover the beauties of the world, its riches, before it is too late.
What is Usher Syndrome?
Usher syndrome is a rare genetic disorder that combines hearing impairment and vision impairment. There are 3 types. Type 1 is the most severe form. Marie has type 2.
In people affected by Usher syndrome, cells in the inner ear are damaged. They do not work properly, hence the hearing loss, which can go as far as deafness, sometimes associated with balance disorders.
Marie has bilateral hearing loss, that is, on both sides. She has been fitted since the age of 5. Her hearing loss is stable today, she has learned to live with this handicap.
Marie explains how she manages to understand the conversations. “I was born with it, I see the world with it, I grew up with it, it shaped me, in the end I knew how to adapt unconsciously. My compensation strategies in relation to hearing, it will be the lips , I’m going to look a lot more at people’s lips, the context too. If I don’t understand what the person is telling me, I won’t immediately ask to repeat, I will try to see with the context if I understand “.
In Marie, the eyesight problems are multiple, she suffers in particular from a cataract associated with retinitis pigmentosa. This leads to progressive loss of vision.
Today, Marie has a narrowed field of vision of 40 degrees, instead of 180 degrees. When Corentin and Marie met 4 years ago, Marie’s handicap was already there, but that was not a problem for the couple.
“We both learned to live with that and I learned to live with her like that and finally we are a bit in harmony”, explains Corentin. “Of course when we walk in the street she holds my arm. We both learned to have signs. Finally when there are stairs I stop to signal her to steps.”
“It reminds me of a dancing couple, for example in waltz, there is always a leader, it’s as if Corentin was the leader and I am the movement,” comments Marie. “If he pulls me to the left, I suspect that there is an obstacle that I did not see or that I missed or someone”.
Leader or guide dog
Usher syndrome is a degenerative disease that progresses. Eventually, Marie may lose her sight completely. There is no cure today although research is progressing.
It is a sword of Damocles and this is the reason why Marie and Corentin embarked on a somewhat crazy project, aboard their van.
Around the world in a van
The globetrotters left in June 2018, in a van. On the program: South Korea, Canada, the Philippines, Japan … and many other destinations. They have a “smiles around the world” logo on their van.
Corentin and Marie wanted to take a photo, to immortalize the smiles of the people they met on their way to the 4 corners of the globe.
Enjoy before it’s too late
Marie also wants to raise awareness of Usher’s syndrome and show through this project that disability is not a hindrance, a barrier to travel. Even in big cities, like Tokyo.
Marie and Corentin have resumed their journey. This time on the roads of France, given the health context. You can meet them today near Cap-Ferret.
You can also follow the adventures of this extraordinary couple on the site: smilesautourdumonde.com.