Pope embraces those afflicted with Huntington’s disease

VATICAN CITY — Pope Francis embraced weeping mothers, fathers, and children with Huntington’s Disease on Thursday as he sought to remove the stigma of an incurable genetic disorder that causes such devastating physical and psychiatric effects that its sufferers are often shunned and abandoned.

One by one, Francis blessed and greeted each of the 150 people with Huntington’s, as well as their family members and caregivers, who traveled from around the world for the hour-long visit in the Vatican audience hall. Organizers said the meeting marked the first time a world leader had recognized the plight of those who suffer from Huntington’s.

‘‘May none of you ever feel you are alone,’’ Francis told the crowd of about 1,700. ‘‘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.’’


Many of the families came from South America, where Huntington’s is 1,000 times more prevalent than in the rest of the world. It is particularly prevalent in Venezuela, where the affected gene was first identified 25 years ago and where the stigma has led to such isolation that carriers have intermarried for generations, leading to greater numbers of sick.

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One Colombian woman in the front row, Dilia, has had four of her 11 children die of Huntington’s, while four others are sick with it. Brenda, a 15-year old from Francis’ native Buenos Aires, got a special hug from the pope. Her father died from Huntington’s-related ailments, and Brenda was abandoned by her mother when she herself was diagnosed.

The disease causes cells in parts of the brain to die, resulting over time in involuntary movements, personality and mood changes, and slurred speech. Many suffer from psychiatric problems, including depression and anxiety.

Often the social stigma and superstition associated with Huntington’s forces families to keep their relatives hidden. In some parts of Latin America, sufferers are thought to be possessed by the devil.

Associated Press