Keep Hope, Enjoy Life to the Fullest and Fight Your Fears
Interview with the Founder of the Project "Explore for Huntington", the French Traveller Dimitri Poffé
– Written by the Moving Forward Team on June 7th 2022
Photo 1. Courtesy of Dimitri Poffé
The HD community shows a unique solidarity and tons of inspiration when sharing their life stories. Dimitri Poffé is one of those people who stimulates the HD community. About a year ago, Dimitri started the project “Explore for Huntington”, which got him travelling by bike all over Latin America to raise awareness about Huntington’s disease, to meet HD families and learn about their stories (Photo 1). Many people in Latin America live in poverty, lack formal education, and have very little information about HD, which has a tremendous impact on their lives. As Dimitri notes “we can give money to Latin America, but it will never substitute proper and reliable information about Huntington’s disease”.
We caught Dimitri in Cali, the greenest city of Colombia, and Zaynab Umakhanova, our Russian national coordinator, had an online interview with him (Photo 2).
What is your relationship with HD?
HD came from my father, who died more than 20 years ago. Nobody knew my father had HD because the doctors had a lack of information about this disease. So my father was suffering with HD even not knowing the name of it. After his death, my sister, who was a nurse, started to search information about the death causes and found out that it was HD in my father’s medical file. We were very scared of Huntington’s disease and didn’t want to get tested. My sister showed the first symptoms when she was 28 though she never got tested. I wanted to plan my life, my career, my family, so I got my test at the age of 30. And the test was positive.
When and how did you come up with the idea of Explore for Huntington?
Photo 2.
Since I got tested, I tried to live my life to the fullest, trying to live my dream. When I got my test result, I left my job in Paris, sold everything I had and started travelling because I always wanted to travel around the world. During the pandemic I came back home to Paris, and started planning the project “Explore for Huntington” and working to earn some money to fund it.
Thanks to HD I started enjoying my life, I changed all my habits, I changed my nutrition, I try to train my body and brain, and this journey helps me in this: I speak different languages, meet different people, I do a lot of physical activity, and eat healthy food. Now I am living my dream and do what I want in life – I travel by bike, meet nice people, share my experience and knowledge with them, enjoy being in nature.
What inspires you and supports you in your journey?
All the people I meet with HD and their families inspire me. Families in Latin America are living in poverty, and they struggle with HD, which makes life even more complicated. And they don’t complain, they live happily. These people are so kind, they support each other, they give me food, money, offer me a place to stay at their homes and give me a lot of motivation to continue my journey. They do not realise that they are a true inspiration for me, they think that I inspire them!
Honestly, I am also fighting with the fear of having Huntington’s disease. I feel tired when I bike many kilometres and face inconveniences and sleep in a tent, but when I meet such people, I want to be the best version of myself (Photo 3). We have a great community, and, since I started this journey, I met a lot of good people on my way. And we all are scared of this disease. We need to talk about it, share our experiences and knowledge, so that we can find something for the community. The lack of information about HD worsens the quality of life of HD families. I met a woman who has 15 kids and 10 of them have HD. People in Latin America get more and more kids and spread the gene among them because of the lack of knowledge about the hereditary nature of the disease. That is why information is so much needed here.
What do you think about the Moving Forward project?
I think it is a very important project. I learned about the European Huntington Association about a year ago when I started working on my project and you are doing your job very professionally, supporting and connecting people with HD in Europe, working together with researchers, neurologists, geneticists and other healthcare professionals, sharing information with HD families.
What are your plans for the future?
To find a cure! For sure. And I also want to visit every country in the world. I really enjoy what I do and living my dream life.
What would be your personal message to the HD family members that are following your journey?
To keep hope, enjoy their lives to the fullest, to fight their fears about HD and stick together, because we are stronger together! We only live once, but many people do what they don’t like to do, just because they have fears. And fears are only in your mind. And, when we face the reality of this world, these fears prove to disappear.
