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Huntington's disease sufferers head for historic meeting with Pope

Thursday, May 18, 2017 - 01:07

Huntington's disease sufferers are gathering in Vatican City ahead of Thursday's historic meeting with Pope Francis. Rough cut (no reporter narration).

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NOTE TO EDITORS: RESENDING TO CORRECT TIMELINE OF ARRIVALS AND MEETING WITH POPE ROUGH CUT. NO REPORTER NARRATION. 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 on Thursday (May 18), which organisers hope will help focus attention on the affliction. Former NBC correspondent and HD sufferer Charles Sabine said "the meeting with Pope Francis marks the most historic moment in the history of Huntington's disease, which is a disease hidden from much of society for centuries because of the shame and the stigma attached to it. This is the first time that any major world leader has ever recognised the existence of this disease, let alone met patients and spoken the words 'Huntington's disease'', so it is of profound importance". Many of the sufferers attending the meeting 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.

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Huntington's disease sufferers head for historic meeting with Pope

Thursday, May 18, 2017 - 01:07