Pope Francis to Huntington’s patients: You deserve respect and love
VATICAN— Pope Francis on Thursday offered a message of hope and love to patients with Huntington’s disease, a rare and incurable genetic brain disorder that causes intense suffering.
According to organizers, it was the first time that a pope – or any world leader – had recognized the plight of those with the disease.
In his speech, Francis said the fears and difficulties of people affected by Huntington’s disease have been surrounded “with misunderstandings and barriers (for) far too long.”
“In many cases the sick and their families have experienced the tragedy of shame, isolation and abandonment. Today, however, we are here because we want to say to ourselves and all the world: ‘HIDDEN NO MORE!’” he said.
This isn’t just a slogan, but a commitment we must foster, he continued.
“The strength and conviction with which we pronounce these words derive precisely from what Jesus himself taught us,” he said, noting that throughout his ministry, Jesus “met many sick people; he took on their suffering; he tore down the walls of stigma and of marginalization that prevented so many of them from feeling respected and loved.”
Pope Francis spoke during a conference organized at the Vatican hosting people affected by Huntington’s disease, along with their families and caretakers.
Huntington’s disease is characterized by rapid, uncontrollable muscle movement known as chorea. As the disease progresses, it can lead to loss of control over speech and memory, dementia and death. The gene which causes Huntington’s was discovered nearly 25 years ago, but there is still no cure and relatively limited treatment options.
This is especially true for people living in South America, where prevalence of the disease is almost 1,000 times higher than in the rest of the world and often combined with extreme poverty. Because the disease affects families generationally, they are often caught in a cycle of need.
The meeting with Pope Francis was called “HDdennomore” (pronounced “hidden no more”) and put on in special solidarity with South America. Two families from Venezuela, two from Colombia, and one girl from Argentina – all affected by the disease in different ways – were brought to the Vatican by a humanitarian group to meet the Pope.
Also present at the audience were members of the medical and scientific communities who treat the patients with Huntington’s and perform research on how to prevent the disease or slow its progression.
In total, there were some 1,700 people present from 16 different countries. Seated in the front row were 150 people affected by Huntington’s that each got a personal greeting from Pope Francis, who stayed nearly an hour after the audience concluded in order to greet them all individually.
Jesus never let disease keep him from an encounter with people, but instead taught that every human person is precious and has dignity – something no person or illness can erase, the Pope explained.
“Brothers and sisters, as you see, you are a large and motivated community,” he concluded.
“May the life of each of you – both those who are directly affected by Huntington’s disease and those who work hard every day to support the sick in their pain and difficulty – be a living witness to the hope that Christ has given us,” he said, noting that “even through suffering there passes a path of abundant good, which we can travel together.”
Stressing the value of every human life, the Pope emphasized that no outcome can ever justify the use or destruction of embryos for scientific research – even for the commendable cause of trying to help those suffering from incurable diseases.
“Some branches of research use human embryos, inevitably causing their destruction. But we know that no ends, even noble in themselves – such as a predicted utility for science, for other human beings or for society – can justify the destruction of human embryos,” he said May 18.
Currently there are several ethical problems surrounding the research on Huntington’s disease, including the use of embryonic stem cells taken from embryos made through in vitro fertilization.
The Pope noted this fact during the audience, encouraging scientists to pursue scientific advancement only through means that do not contribute to the “throw-away culture” which treats human beings as objects for use.