Throughout the month of May, the HDSA has been sharing daily stories of people that are living with HD. Some are very inspirational, some are heartbreaking and some bring hope. But one of them made my head want to explode. It was one that highlighted a lot of the misinformation that people have about this disease.
The story that I read was written by a mother who's daughter was in her mid 20's and had just received a diagnosis of Huntington's Disease. She told the story of how her boyfriend's father and brother were diagnosed with HD while they were dating. But his family told her that only men got it. That it never affected women. Yes, you read that right. They seriously told her that. I would beg to differ since Robert's mother, sister and cousin have all been infected by the Huntington gene.
So, needless to say, this lady was overjoyed when she was told that she was having a girl because that meant if the dad did have the disease, her daughter wouldn't inherit it. They broke up and lost contact before her daughter was born so this mother never knew that her daughter's father also inherited the disease. Imagine her surprise when her daughter was diagnosed with HD after she had been told that females couldn't get the disease.
Awareness matters! Miseducation, misinformation or overall misunderstanding cause problems that lead to stories like this. We have a duty as those exposed to Huntington's Disease to educate those around us and raise awareness so that people are getting true and accurate information.
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