Pope Francis has a message for those suffering from Huntington’s disease and their families: “Hide no more.”
In an emotional event Thursday in Vatican City meant to highlight global awareness of the brain disorder, the Pontiff went out of his way to bless those afflicted and thank their caretakers.
“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,” he said.
Huntington’s is a genetic disease that prompts nerve cells in the brain to break down, leading to declines in motor skills and cognitive abilities. Over time, sufferers lose the ability to walk, speak or control their emotions.
Symptoms often appear after individuals reach adulthood, usually between ages 30 and 50. This often leads to multiple members of the same family having the condition, as every child of a parent with the gene linked to Huntington’s has a 50 percent chance of inheriting the disease.
In many cultures, the disease plagued by stigma and superstition. Some even believe it is a curse caused the by the devil.
As a result, many families and caretakers choose to hide their relatives with Huntington’s from society, further amplifying psychiatric problems like depression and anxiety that coincide with cognitive declines.
At Thursday’s event, the Pope pushed back against the stigma, saying “for far too long, the fears and difficulties that characterise the life of people affected by Huntington’s Disease have surrounded them with misunderstandings and barriers, veritably excluding them.”
He also praised geneticists and scientists searching for Huntington’s disease treatments, but cautioned against the use of human embryos in their research.
“I encourage you to carry out [your work] in ways that do not contribute to nourishing the ‘throwaway culture’ that sometimes creeps into scientific research,” he said. “We know 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.”
Many of those present at Thursday’s event traveled from the Pope’s home continent of South America, where, in some regions, prevalence of Huntington’s disease is up to 1,000 times higher than the rest of the world.