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Rome Reports

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Huntington's patients describe what it's like to suffer from this rare disease

Many of these people have hidden their illness for years, as if it were a shame or curse. They have Huntington's disease, an incurable genetic disease that slowly deteriorates brain cells and the nervous system. The majority of people that suffer from Huntington's come from South America, in areas where they have very few resources. This woman had to leave her own family in order to help her mother take care of her four brothers, all of whom suffer from the disease.  "They say that they are disappointed with me because I did not give them all the time that they needed. But they are fine, thanks to God, because my mom and my brothers needed me more." "It is quite complicated to have to deal with your brothers who suffer from this disease, and four are already dead ... My father and a niece." Journalist Charles Sabine experienced first hand the effects of this disease when it entered his family.  CHARLES SABINE "I was completely unaware of the existence of Huntington disease until in 1994 my father who had been sick with "somethingâ? was announced to have had Huntington disease. It was a huge shock but I discovered that this is the way in which people discover that they have Huntington disease existing in their families, it's a surprise.â? Now, he is a defender of patients with degenerative brain diseases, because it's a topic that is far from the daily media. He says that the most difficult thing for those who suffer from it is to recognize it.  CHARLES SABINE "What happens is that people are very worried about the stigma associated with the disease, and my family as most others hid the disease not only to other people but from their own family members like myself and my brother. Those are the extremes that a family will go to.â?  In their meeting with Pope Francis, they hope to find an answer, something that will relieve them and that will give them the will to keep fighting.  "That is my goal, to come and see how this disease is cured.â? For every 100,000 people in the world, between five and seven people suffer from Huntington's. It is a minority that Pope Francis is willing to support and recognize, so that none of them feel excluded or abandoned. AQ/JC AA - F -Pr Up: JC