VATICAN CITY (CNS) — Pope Francis’ meeting with families affected by Huntington’s disease will bring much-needed attention and hope to men, women and children who often are ostracized and even left to die alone and unloved, a U.S.-based neuroscientist said.
Especially in poor countries, people suffering from Huntington’s, a neural degenerative disorder, face discrimination and are forced to live in areas that “almost look like a leprosy colony” because “nobody wants to mix with them,” the neuroscientist Ignacio Munoz-Sanjuan told Catholic News Service May 17.
“I think the fact that a figure like the pope is going to speak about (Huntington’s) disease will hopefully generate enough interest,” he said. “Because I think it’s just unacceptable in any country that people are left to starve. I think we need to do better as a society.”
Munoz-Sanjuan co-founded HDdennomore (pronounced “Hidden no more”), a coalition of neuroscientists, research experts and institutes with the goal of “ending the stigma and shame around the disease.”
He joined Cardinal Gianfranco Ravasi, president of the Pontifical Council for Culture, and several families from South America at a Vatican press briefing on the eve of their May 18 meeting with Pope Francis.
Huntington’s disease, an incurable disorder that is genetically inherited, results in the death of brain cells and causes problems with a person’s mental abilities, body coordination and movement.
According to the Huntington Study Group, the disease is prevalent in Europe and countries of European origin, such as the United States and Australia. However, in South America, Huntington’s disease rates are 1,000 times higher than in the rest of the world.
Munoz-Sanjuan told CNS that since the disease’s discovery in 1872, the uncontrollable movements that characterize the disease have led to the marginalization of those afflicted.
“In older times, people thought that they were cursed or that the devil had taken possession of their bodies,” he said. “So, there is a history of stigma associated with the disease. More recently, it is the inherited pattern of the disease where people don’t want to marry people” who carry the faulty gene. “They don’t want to be associated with them.”
The social stigma attached to Huntington’s disease has led to another sad statistic. According to a 2014 study by Dr. Samuel Franks of the Huntington’s Disease Society of America, 25 percent of those affected attempt suicide and nearly 9 percent succeed in taking their own lives.
Many of those patients who turn to suicide, Munoz-Sanjuan said, suffer from depression that is “exacerbated by the stigma.”
“When kids see their parents die of this, some patients kill themselves when they realize they will suffer the same fate,” he told CNS.
Education, he added, is important not only for those showing symptoms but also for their family members and support structure. Access to psychological and psychiatric care are crucial so that patients, especially children who inherit the disease, do not “feel alienated.”
Cardinal Ravasi told CNS that Pope Francis’ meeting with Huntington’s disease patients and their families highlights the Vatican’s concern and care not only for the “medical, therapeutic and technical” aspects of the disease, but also its “human dimension.”
The meeting with the pope, the cardinal said, “has a special significance” since many cases come from South America.
He also said the pope wanted to meet with the group after a person suffering from the disease asked him to do so.
“The fact that he wanted to meet with such a small group is important because it isn’t a (widespread) sickness like Alzheimer’s or Parkinson’s — even if they do have similar effects — but it can provide an element that will stimulate attention on a global level,” Cardinal Ravasi told CNS.
Among the patients and family members present at the briefing was a woman identified only as Dilia from El Dificil, Colombia, a mother who lost her husband and four of her 11 children to the degenerative disease. Four more of her children are currently living with Huntington’s disease.
When asked what she would tell Pope Francis, Dilia said she “would ask him for healing so that a cure maybe found.” While she suffered the loss of five members of her family, Dilia insisted that “it isn’t just my children” who suffer from incurable disease.
“There are many people who are sick in my country and they suffer because it happens mainly to the poor,” she said. “It happens to the ones who hardly have anything to live by because one who has money can receive treatment whereas one who doesn’t have money can just die quickly.”
Despite her pain, the 79-year-old matriarch said that she still holds on to hope for her surviving children and others suffering from the disease.
“I’m hoping for people with good hearts who can help us,” she said.