The day Pope Francis met Huntington’s Disease 

The 18th of May people gathered in the Vatican. It was an event unlike any other: the largest global gathering of the Huntington’s Disease community. Twenty-six countries sat side by side: from New Zealand to Norway, from Brazil to Poland. Why? To meet one man: Pope Francis. And to tell the world that Huntington’s disease should be Hidden No More.

Read more about the event here

From Russia to Rome 

with Yulia Tsvetkova

During the Audience with Pope Francis the 18th of May, the European Huntington Association met Yulia Tsvetkova in Rome. We talked about Huntington’s disease (HD), the event and the situation in Russia today. 

 

“Marianne” 

performed by Kim 

Kim is in his 30’s. He grew up with his mother who suffered from Huntington’s disease (HD). In 2008 he was diagnosed with the same disease. Kim struggled with depression, anxiety and a negative outlook on the future. Listen to Kim’s touching song to his daughter. 

Read more about Kim’s story and music therapy here

Note: Kim’s song to his daughter is published with approval from Kim and his family.

DingDingDong 

with Alice Rivieres

Alice Rivières is French. When you look at her, she looks like every other person. Except that she might be a bit more 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). 

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. 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.

Find the full article here

For english subtitles: press the “CC” button in the lower right corner.

Living with Huntington’s Disease

with Tove & Angela

How is it really to live with Huntington’s Disease?

Angela is 25 years old. She got diagnosed in the summer of 2016, but started to get sick in her early twenties. Among many other things, her movements make dressing herself into a time-consuming task.  Despite all this, Angela still has hope.

Tove Berg learned that she had HD when she was around 60 years old.  It came as a shock as nobody in her family had the disease. Before getting the disease Tove worked as a professor. She is now at a day-care facility a few days a week where Tove is running writing courses for patients and staff. Her story is a strong testimony of how a life with the disease is still worthwhile.

 

Living in a Huntington’s Disease family

with Anne Lennon Bird

Anne Lennon Bird got married to a man who turned out to be a carrier of Huntington’s disease. Donald was diagnosed when their three children was around 9, 11 and 13 years. By that time he had already been sick for many years.

Now Anne is on the board of the Huntington’s Disease Association of Ireland. She’s also a mother living in a Huntington’s disease (HD) family. How is it to live in a HD family – to be a wife and a mother? Hear Anne’s story in the interview.