<span class="translation_missing" title="translation missing: en.hdyo.land.loading">Loading</span>
Home Language What is HD? New to HD? Find Resources Research Ask for Help About HDYO News Videos Store Join Mailing List Kids Teens Young Adults Parents and Family JoHD Friends Professionals DONATE! Privacy Contact Us

Anne's story

May 9, 2021

Huntington's Disease Youth Organization

HDYO has more information about HD available for young people, parents and professionals on our site:


Hello! My name is Anne. I am 24 years old and currently shifting between living in Colombia and Sweden. When I was born, my uncle had Huntington's disease, and later on, my dad as well. My dad passed away during the beginning of the pandemic in 2020, and I miss him a lot. I am now the only person at risk in my family and somehow related to Huntington's disease, and what I have always been doing is to learn more about the disease from different perspectives and telling my story from a more positive perspective.

Swedish flag

Hej! Mitt namn är Anne. Jag är 24 år gammal och skiftar med att bo i Colombia och Sverige. När jag föddes så hade min farbror Huntingtons sjukdom, och sedan därefter, min pappa också. Min pappa gick bort i början av pandemin 2020 och jag saknar honom väldigt mycket. Jag är nu den enda personen som är i riskgruppen i min familj och som har en typ av relation med Huntingtons sjukdom, och vad jag alltid har gjort är att lära mig mer om sjukdomen från olika perspektiv och berätta min historia från ett positivare perspektiv.

Colombia flag

¡Hola! Mi nombre es Anne. Tengo 24 años y estoy ahora viviendo en dos lugares: Colombia y Suecia. Cuando nací, mi tío tenía la enfermedad de Huntingtons, y luego, después, mi papá también. Mi papá falleció durante el comienzo de la pandemia en 2020, y lo extraño mucho. Soy la única persona en riesgo en mi familia y que tiene de alguna forma una relación con Huntingtons. Lo que yo siempre he hecho es aprender más sobre la enfermedad desde perspectivas diferentes y contar mi historia desde una perspectiva más positiva.

Sharing a video of my dad and I dancing. I think it's interesting because Huntington's chorea basically means dance in greek, and my dad loved dancing. And when he got sick, what didn't bother him so much was the movements, it was more the other symptoms. He was a very funny, active and caring dad, so I really want to put a light on that these people are someone's father/mother, and that they're not just a patient. They're someone more than that, and that someone who has made a great impact on a lot of people.


Our content is split into different groups. Choose the group that best describes your needs for more information on HD.

Kids Teens Young Adults Parents and Family JoHD Friends Professionals