Alice Rivières is a French woman. When you look at her, she looks like every other person. Except that she might be a bit more kind, well-spoken and optimistic than the normal person you would meet on the street. And that she has a family history with Huntington’s disease (HD). Watch her strong story in the video below.
Alices’ mother got sick 20 years ago. Ten years later she decided to get tested. It felt like a part of her just needed to know: needed to be certain to be able to get on in her life. And she was “sure not to have it, so…” Unfortunately Alices’ test results came back positive – which in case of HD is the answer you don’t want. She had the disease.
Alice has known for ten years. In four of them she felt powerless. After a while she understood that she had to reconcile with the disease: it was not an alien inside of her, but a part of her. “I had to learn how to live with it and not against it,” she says.
Now she’s more optimistic about the future. Alice co-founded Ding Ding Dong, an organization that works with giving people impacted by HD a voice. Through different art forms such as dancing, Ding Ding Dong explores the many sides of HD. “To us HD is not something ugly, it is something very special and interesting,” she says.
Ding Ding Dong want to encourage people with HD to speak about the disease and show the world that also “sick people” have something to say. Alices’ philosophy is that the society has something to learn from people with HD, from people that are a bit different.
After all, we are all different in one way or another.