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Living on the street with Huntington’s

Today’s “life stories” brings us to a very difficult and sad place, but one that unfortunately exists. Many people with Huntington’s end up abandoned on the street. Whether left by their families or due to psychiatric issues that arise from the disease itself, young HD affected persons sometimes end up living on the streets. The combination of abandonment, poverty and disease, when mixed with crime, can have devastating consequences. Recently, I received a call from Sonia Moreno from Medellin. She was crying. She mentioned that she was contacted by one of the Caritas centers in Medellin because they had found one HD patient who had been severely beaten on the streets. Lets call him “G”. He had been missing for 3 years, and was in really bad shape. She asked to see if Factor-H could help pay for clothes and gifts. Sonia had seen him grow up as a child, and now she had to see him in such a condition. She cried of sadness and frustration, and kept repeating she would not allow for him to go back to living on the streets. He won’t. G’s mother died of HD when she was 48. After she died, one of her sons went to live with an uncle, and G went to live with his dad. His life was hard, and G started using drugs and had no medical care. When his brother started getting sick, he too went to live with G and their dad. G’s father died in violent circumstances and therefore both kids ended up without any parental support. G’s brother ended up on the street at age 21, although he finally was moved to a care center, where he is still there today. G has spent more or less 15 years living on and off on the streets, several of them with Huntington’s. He is now 29, and since Sonia went to see him in the hospital, she found a municipal care center for him to be taken care of.  Right now he is getting medical assistance, good nutrition, and therapy. Sonia visits him periodically. Her cries of frustration and sadness have a lot to do with the fact that she saw G grow up, his mother die, and his life becoming unsufferable, but they are also a desperate scream about how we, as societies, treat those most in need. No one should die on the streets, least of all a young person suffering from Huntington’s. G represents the untold stories of many young people affected by HD. Ignored by society and victims of the ravaging effects of HD in families. We can’t stand in silence and let them die in abandonment and neglect. We can and will do better.

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