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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).
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.
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. The nature of the disease gave her three children a fifty percent chance of carrying the same gene as their father. As a result they have been taking a different approach to whether taking a genetic test or not. Two of them got tested, one decided not to.
How is it to live in a HD family – to be a wife and a mother? Hear Anne’s story in the interview above.
For english subtitles: press the “CC” button in the lower right corner.
In November the European Huntington Association (EHA) met two strong women in Oslo, Norway. We interviewed them to hear their side of the story: how is it really to live with Huntington’s Disease (HD)? Watch their answers in the video.
Angela is 25 years old. She got diagnosed in the summer of 2016, but started to get sick in her early twenties. She is currently living in a student apartment which she shares with five other students. However, her everyday life can sometimes get hard. 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. To deal with the situation she started to write – as she had previous done in her profession. Her writings about HD has been published in two Norwegian journals (here and here). 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.
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.
Yulia Tsvetkova is from Russia. She currently lives in Moscow, but the day EHA met her she found herself in Rome. She travelled together with her mother to attend the huge Huntington’s disease event made possible by HDdennomore (“Hidden no more”). When we met her it was only minutes ago since she and her mom had met Pope Francis face to face.
“This was an event that couldn’t be missed,” Yulia eagerly stated. Her mother had previously sung in the local church quire and she glowed when she heard beautiful music again. But the best part was to meet the Pope, to shake his hand and give him a hug.
Read more: The Day Pope Francis met HD
Huntington’s disease impacted from all over the world had come together in the Vatican to participate at the event. Yulia stated that no matter nationality, religion and language: faith doesn’t see any borders. An event like the one in the Vatican gave the Russian woman hope: “Faith united us today”.
The aim of the event was to tell the world that Huntington’s disease should be hidden no more. And Yulia is constantly working on that message. Her grandmother got sick and no one talked about it. No one knew what it was, and no one could support the family. It was a disease wrapped up in taboo.
When the family learned that Yulia’s mother had inherited the disease, the situation had fortunately improved. At the Research Center of Neurology in Moscow they got information and help. Lately a Russian HD community has taken shape – thanks to Irishka Horoshilova and others.
Read more: EHA in Russia
Yulia has a positive outlook on the future; more people has got to know about the disease in Russia and the stigma surrounding it is about to fall apart. She hopes that the HD community of the world can meet again in 10 years – only this time it is not to meet the Pope; in 10 years it is to get introduced to a new drug. “The science is on our side,” she states with a glow in her eyes.
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.
The event came to life thanks to a coalition of HD advocates. They formed the HDdennomore (“Hidden no more”) initiative with the aim to raise awareness around HD – and to eventually end the stigma that often follow with the disease.
Pope Francis is born in Buenos Aires, Argentina – the area of the world where HD prevalence is among the highest. Due to geographic isolation and a history with stigma – isolating people with HD from the rest of the community – the prevalence is 100 to 1,000 times higher in South America than in other places.
The social stigma that is associated with the disease forces families to hide their relatives – and in some parts of South America people suffering from Huntington’s is thought to be possessed by the devil.
To address all these issues Elena Cattaneo, one of the advocates that formed HDdennomore, wrote Pope Francis last June. She asked if he could meet one single gene carrier. Pope Francis’ reply? Why only meet one, when so many is suffering? And so it started with one, but ended up with 1700.
Read more: Elena Cattaneo’s speech to pope Francis
Families from Colombia, Venezuela and Argentina travelled to meet Pope Francis in the Vatican. And so did hundreds of others from all over the world.
THE MANY FACES OF HUNTINGTON’S DISEASE
Five families received a formal invitation. They all had a special history with HD. Special in the way that stigma had forced them out of the society and deprived them the possibility of living a “normal” life.
See more: Video introduction of the families.
During the audience the families sat on the front row. Among them was John Jairo from Colombia. John was forced to flee his hometown and later lost his job because of HD. Also from Colombia was Dilia; a 79 year old woman that had to bury four of her 11 children due to the disease. Now she is taking care of four of the others.
From Pope Francis’ place of birth, Buenos Aires, were Brenda and Norma. Brenda is 15 year old and has juvenile HD. Norma is her aunt, but treat her as a daughter. Brendas’ biological mother left when she realized her child had inherited the disease. During the audience, Brenda got to meet one of her favorite artists: Axel. He performed a song for her on stage and accompanied the excited 15 year old when she met Pope Francis.
From Venezuela was 13 year old Anyervi. Tragically, he’s been taken out of school as a result of being excluded by his fellow schoolmates. The last family was three siblings from Barranquitas: Maria Esther, Franklin & Yosbely. One by one, each of the siblings was diagnosed with Huntington’s. Maria Esther was abandoned by her husband and Franklin’s wife died of a suspected case of juvenile HD – giving Franklin’s children a 75 % chance of inherit the disease.
All these stories demonstrate why it is so important to remove the stigma that follows with HD. And why the disease should be Hidden No More.
YOU ARE NOT ALONE
And Pope Francis did an amazing contribution on the road to destigmatization. One by one the Pope greeted all the 150 people affected by Huntington’s disease, their family members and caregivers.
“May none of you ever feel you are alone. May none of you feel you are a burden. May no one ever feel the need to run away,” Francis told the crowd.
Read more: Pope Francis’ speech
The words of Pope Francis’ was exactly what Charles Sabine, one of the advocates behind the audience, wanted to hear. Before the event, he told EHA: “What I want him to say, in some way, is that the disease should not be hidden anymore”. During the audience Sabine told the crowd that the day marked a new chapter in the “history of humanity’s forgotten families”. He then went on and thanked the Pope.
Read more: Charles Sabine’s speech
PRESENT AT THE AUDIENCE
The European Huntington Association was represented by Astri Arnesen, Barbara D’Alessio, Bea de Schepper, Dina de Sousa, Svein Olaf Olsen and Danuta Liz.
Danuta Liz had arranged for and travelled together with a group of 30 HD impacted from Poland. The travel of the families from Poland was specifically unwritten by a donor who, upon hearing that there were not funds to support their trip, generously stepped in to provide support. The group was one of the biggest of its kind – together with the group from Italy.
In addition to patient associations, there were research organizations, scientists and clinicians present at the event. The press coverage were huge, with international journalists filling up the press area.
It was in other words an event unlike any other: the largest global gathering of the Huntington’s Disease community. So let’s stand together and tell the world that HD should be Hidden No More.