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.

May none of you ever feel you are alone. May none of you feel you are a burden

– Pope Francis

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. 

 

  • Left to right: Svein Olaf Olsen, Nancy Wexler and Bea de Schepper. Nancy Wexler was one of the pioneers in identifying the Huntington's gene