Sufferers of Huntington's disease arrive at Vatican ahead of historic meeting with Pope Francis

Record ID: 876321

  • Title: Sufferers of Huntington's disease arrive at Vatican ahead of historic meeting with Pope Francis
  • Date: 17th May 2017
  • Summary: ROME, ITALY (MAY 16, 2017) (REUTERS) VARIOUS OF HUNTINGTON'S DISEASE (HD) SUFFERERS AND THEIR RELATIVES IN CONVENT AHEAD OF MEETING WITH POPE FRANCIS VARIOUS OF HD SUFFERERS AND RELATIVES ARRIVING AT CONVENT AFTER A TOUR OF ROME (SOUNDBITE) (English) NEUROBIOLOGIST, VICE-PRESIDENT OF BIOLOGY IN CHDI MANAGEMENT AND FOUNDER OF NGO FACTOR-H, IGNACIO MUNOZ-SANJUAN, SAYING: ''The disease is genetic and it is a dominant disease, so every person affected, each one of their kids has a fifty percent chance of developing the disease. This means that the families will have multiple members of the family that get sick. In countries like in Latin America, where a lot of the families come from for the event with the Pope, families tend to be very large and because this is a genetic disease many members of the family are affected.''
  • Embargoed: 31st May 2017 10:31
  • Keywords: Latin America Pope Francis Vatican Huntington's disease
  • Location: VATICAN CITY/ ROME, ITALY/ SAN LUIS, EL DIFICIL AND BARRANQUITAS, VENEZUELA
  • City: VATICAN CITY/ ROME, ITALY/ SAN LUIS, EL DIFICIL AND BARRANQUITAS, VENEZUELA
  • Country: Italy
  • Topics: Society/Social Issues
  • Reuters ID: LVA0026H85IDJ
  • Aspect Ratio: 16:9
  • Story Text: Sufferers of Huntington's disease (HD) began arriving at a convent close to the Vatican on Tuesday (May 16) ahead of a historic meeting with Pope Francis, which organisers hope will shed more attention on the affliction.
    Many of the sufferers have travelled to Rome from Latin America, home continent of the pope, and an area where a key search for the HD gene took place from the 1970s to the 1990s.
    Huntington's disease is an inherited condition that causes the progressive breakdown of nerve cells in the brain, resulting in a gradual decline in motor control, cognition and mental stability. The disease can eventually make a person unable to walk, talk or swallow. As it is genetic, it can affect several generations in the same family, pulling them into poverty.
    In some Latin American countries such as Colombia and in the Lake Maracaibo region of Venezuela, many families affected with HD gather in the same area and are often neglected.
    Charles Sabine, a former NBC correspondent suffers from Huntington's disease. His father died of the same illness and he has an elder brother affected by Huntington's. He believes the meeting with Pope Francis scheduled on Thursday (May 18) with thousands of people due to attend, will be the first time any world leader draws attention to the disease. He hopes the attention will lead to help for families affected by the disease and re-energise work into possible cures and prevention for the affliction.
    Estimates for those suffering from Huntington's are challenging due to the stigma of the disease and whether the calculations focus on symptoms or gene carriers - or both. According to the U.S. National Institutes of Health (NIH) the prevalence of people presenting the disease is 2.7 per 100,000 globally, this does not include gene carriers. Prevalence is up to 1,000 times higher in pockets of Latin America.
  • Copyright Holder: REUTERS
  • Copyright Notice: (c) Copyright Thomson Reuters 2017. Open For Restrictions - http://about.reuters.com/fulllegal.asp
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