Table of Contents
THE INHERITED SHAME
Take a look at our interview series with the Norwegian author Thorvald Steen. When he was 15 years old, Steen got diagnosed with a genetic disease. To dive deeper into his family history – and to try to explain what shame is – he has been writing several novels based on his own experiences with genetic illness and secrets.
In Part I of “The Inherited Shame”, the author talks about when he first found out about having inherited a genetic disease: Facioscapulohumeral.
In Part II of “The Inherited Shame”, Steen talks about how to cope with having a genetic disease: how important it was to open up to close friends and how he was able to see his own strengths instead of limitations:
– In many ways I’m a top sportsman, like many of my friends in the Huntington society, because you have had your enormous problems and difficulties, and you have solved them.
LIFE WITH HD COMES IN MANY FLAVOURS
People affected by HD in their family choose different ways to cope and make different life choices. Nevertheless, we share a lot and have to deal with some common challenges.
Listen to what the well known HD family member, academic and patient advocate from the US, Alice Wexler, has to say about what life with HD can be like.
At the European Huntington Association conference in 2019, we held a session on Predictive Testing – Why Test and Why Not? It can be hard to choose whether to have a predictive test or not. Some people decide to undergo testing, others choose not to.
Alicie Riviéres and Matt Ellison have both undergone predictive testing, and both tested positive for Huntington disease. Following the session, we spoke with Mara Andrade which have not yet decided whether to test or not.
How to Cope
Listen to Mathias Falk’s honest testimony on how it is to live as a gene carrier.
– I said to my friends: “When I get the symptoms, kill me” and they said “Okay, we can do that”. But now I’ve told them: “Don’t”.
Thank you for sharing your story, Mathias.
Start Your Own
It can be of great help to talk to others who are in the same situation as you. That’s exactly what Alice Rivières and her friend thought a few years ago, when they established a support group for for Huntington’s disease gene carriers.
Over the last years they’ve went from two to 35 members. Now they meet once or twice a month to talk about Huntington’s disease and everything related to it. Learn more.
Angela got diagnosed when she was 25, but started to get symptoms in her early twenties. Among many things, her movements made dressing herself into a time-consuming task.
Tove Berg learned that she had Huntington’s when she was in her 60s. It came as a shock as nobody in her family had the disease. Tove used to worke as a professor. In 2016 she was at a day-care facility a few days a week where she was running writing courses for patients and staff.
“I am going to keep smiling”
Irina Kalichko is diagnosed with Huntington’s Disease.
The lack of information worried her but now she’s more optimistic. She encourage people to embrace the positive things in their lives – and to join the Huntington family. Find your local association.
“More than a disease”
In this talk during CHDI Therapeutics Conference, Astri Arnesen, President of the European Huntington Association and her husband, Svein Olaf Olsen, delivered a powerful keynote about Huntington’s.
They talked about marital commitment, denial, genetic testing, and raising a family.
Video: Gene Veritas
Living in a Huntington Family
Anne Lennon Bird is married to a man who got diagnosed with Huntington’s disease.
Now Anne is on the board of the Huntington’s Disease Association of Ireland. She’s also a mother of three children. How is it to live in a Huntington family – to be a wife and a mother?
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 Huntington’s is the answer you don’t want.
Absolute Beginners –
Absolute Beginners is a creative documentary about living with Huntington’s Disease. It is presented by the French Huntington association DingDingDong and directed by Fabrizio Terranova.
In it, six people talk about the onset of the disease and how they are absolute beginners – and at the same time experts. As the disease evolve they have to find new ways to reinvent themselves. They share how they cope with the disease and how they gain empowerment. Watch it here!
Marianne – a song
Kim is in his 30’s. He grew up with his mother who suffered from Huntington’s disease. 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.
HD Travelers -
Meet Dimitri Poffé, a French Huntington Disease advocate, a french Huntington Disease advocate who decided to travel all around the world for roughly 2 years, raising awareness for HD and made crowdfunding to raise funds for Huntington Association and research. He also spoke about his project “ExploreforHuntington”
Adriano's Walk: 1000 km for Huntington's Disease
Adriano Meireles is 28 years old and at risk for Huntington’s disease. To raise awareness and funds for the Portuguese association, Associação Portuguesa Dos Doentes De Huntington, he decided to walk across Portugal.
Read more about his amazing journey here!
HD on the BIKE
2019. To raise awareness of Huntington’s disease during Awareness Month, the European Huntington Association participated with our own team at Škoda Velotour in Frankfurt, Germany 1st of May. Two weeks later, we gathered in Firenze with the help of Lega Italiana Ricerca Huntington-LIRH onlus!
2018. With the help of team leader Jeroen de Schepper, the European Huntington Association biked in Belgium with our own team: HD on the Bike.
First National Meeting
In the beginning of February 2020, all of the Spanish Huntington’s disease associations were gathered in Madrid for the first time.
Spain is one of most populated countries in Europe and have 12 Huntington’s disease associations. The meeting was an important first step in establishing collaboration between them and start working together. Read more.
How to improve care
In January 2020, patient advocates visited the European Reference Network for Rare Neurological Diseases (ERN-RND).
During the meeting, they discussed how to provide better care and improve knowledge of rare diseases. Some of their upcoming work is to create Patient Journeys for the various diseases. The patient advocates will also develop promotional material and share news to raise awareness and knowledge. Read more.
European Huntington Association Business Meeting in Vienna
EHDN Plenary Meeting: World’s Largest Huntington conference
Every second year in September, The European Huntington’s Disease Network (EHDN) hosts one of the world’s largest conferences dedicated solely to Huntington’s disease. The 2018 EHDN plenary meeting took place at the Austria Center Vienna. Get a summary of the inspiring meeting in the video!
Audience with the Pope
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.
People from 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.
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, the event and the situation in Russia today.
Our Moments Together
Here are some things we have done together over the last couple of years. Thank all of you in the Huntington family – you are the best!
HD-COPE: Patient Coalition
What is HD-COPE?
The Huntington’s Disease Coalition for Patient Engagement (HD-COPE) was established in 2017.
HD-COPE consists of members from Huntington families. They work to improve research and trials by giving family-oriented input. Read more.
The first weekend in February was historical: it was the first meeting of the Huntington’s Disease Coalition for Patient Engagement (HD-COPE). They learned about research and met one of the largest pharmaceutical companies in the world. Read more.
Over a period of 4 days, HD-COPE was gathered in New York for their second meeting. The coalition learned more about the latest research and gave input on how to take better care of family members participating in trials.