Huntington’s Disease: Care Partner’s Guide
A Message from Pope Francis
Note: Thank you to Stanford’s Huntington’s Disease Support Group for directing us to this speech given by Pope Francis to Huntington’s Disease patients and their families. We were moved by his compassion and powerful words of support and wanted to pass the Pope’s message along to those in the HD community:
“Disease can also be an opportunity for encounter, for sharing, for solidarity. The sick people who encountered Jesus were restored above all by this awareness. They felt they were listened to, respected, loved. May none of you ever feel you are alone; may none of you feel you are a burden; may no one feel the need to run away. You are precious in the eyes of God; you are precious in the eyes of the Church!
I now turn to the families. Those who experience Huntington’s Disease know that no one can really overcome loneliness and despair if they do not have people at their side who, with self-sacrifice and steadfastness, make themselves ‘travel companions’. You are all this: fathers, mothers, husbands, wives, children, brothers and sisters who, on a daily basis, silently but effectively, accompany your family members on this difficult path. For you, too, at times, the path is an uphill climb. For this reason, I encourage you, too, not to feel you are alone; not to give in to the temptation of the sense of shame or guilt. The family is the privileged place of life and of dignity, and you can cooperate to build that network of solidarity and of help that the family alone can guarantee, and which the family is first called to live.”
The Pope’s full speech can be found at the following link: https://w2.vatican.va/content/francesco/en/speeches/2017/may/documents/papa-francesco_20170518_malati-corea-huntington.html
In the global spotlight, the Pope pushed back against the stigma surrounding HD and offered powerful words of support to both patients and care partners. He also praised researchers searching for treatments, but cautioned against the use of human embryos in research, encouraging scientists to work “in ways that do not contribute to nourishing the ‘throwaway culture’ that sometimes creeps into scientific research.” He argued that “no end, even a noble one like the expectation of a benefit for science, for other human beings or for society, can justify the destruction of human embryos.” While this argument remains controversial and often produces polarized viewpoints, the global gathering remained a unifying event for those affected by Huntington’s Disease.
Pope Francis’ address was given at Aula Paolo VI in Vatican City, Rome during a global gathering that made headlines as the first time a world leader spoke publicly about Huntington’s Disease. Nearly 1,700 people came to the event, 150 of whom were patients, breaking the world record for the largest gathering of those affected by Huntington’s Disease. The event was organized as part of an initiative called Hddennomore ( “Hidden no more”) that seeks to relieve patients and families of the stigma and discrimination surrounding Huntington’s Disease.
Huntington’s disease has a notably high prevalence in certain populations in Latin America, reaching 1,000 times the prevalence observed anywhere else in the world. There are clusters around Lake Maracaibo in Venezuela, and others in Peru and Brazil where the prevalence reaches 2450 per 100,000 inhabitants. These areas are afflicted by poverty, lack of education, and poor access to social services and sufficient medical care. Oftentimes, the communities do not even have access to the genetic test for HD. Moreover, families must care for members afflicted by the disease in challenging living conditions, while facing stigma and discrimination from the communities they live in. Families from over two dozen countries attended Pope Francis’ global gathering, and through support from donors, HDdennomore was able to fly in families from Venezuela, Argentina, and Colombia.
The stigma surrounding Huntington’s disease can be traced back several generations across all regions of the world. In the 1930s, the eugenics movement in the United States suggested forced sterilization of people with Huntington’s Disease. In Nazi Germany, the “Law for the Prevention of Genetically Diseased Offspring” passed compulsory sterilizations, and between 1939 and 1941, Hitler passed the Action T4 program that killed between 75,000 to 250,000 people with intellectual or physical disabilities. In more remote parts of the world with poor understanding and awareness of the disease, there is massive stigma and superstition attached to the condition.
The event at the Vatican was meaningful because it mobilized collective action to lift the stigma and shame surrounding the disease. It was a reminder to patients and families that they are not alone in their experiences and that there is a global community that stands with them, offering compassion and support for the challenges that they face.