My parents and I are very private people. We talk little, we don't open up easily, but sharing our story, which can be the story of many, seemed the right thing to do.
Andrea, 32 years - Montevarchi (AR)
I have known Huntington's disease since my father was diagnosed. Dad inherited HD from my grandmother, who has never been treated, checked or followed medically and passed away about 30 years ago.
The first signs of illness appeared on my father five years ago. My parents knew it could happen, but they had never talked to me about it, they preferred not to even think about it. So, at the first involuntary movements of my father, my mother immediately understood what it was, but I didn't.
I am an only child. My father was almost a brother to me, more than a parent.
He is still quite autonomous, but he has stopped driving for about a year. We often rode together, competed. We had to stop. My relationship with him, however, hasn't changed. I live with my partner, but I go to see him every day.
My parents and I are very private people. It is thanks to my partner that we have approached LIRH. If she hadn't been there, honestly, I don't know if we would have ever contacted you but, now that we have, I'm happy with it. Our relatives and friends are aware of our family situation, but we don't talk to them about it. We only talk about it between the three of us. My father did not want us to talk about HD with anyone but the three of us, because he never accepted the disease.
Dad and I both participate in Enroll-HD. My dad also participates in the HDClarity study.
I am not in contact with other guys like me. However, where we live, there was a gentleman long ago: when we saw him walking down the street, we had the doubt that he might have this disease. Then, on the occasion of his funeral, among the mortuary participations there were notes in which LIRH was thanked for its research on Huntington's disease. I later found out I know that gentleman's daughter. I haven't talked to her yet, but I'd like to.
To someone my age who finds out there is HD in the family, I would say not to be ashamed.
For my future I don't know what to expect, I live day by day. I didn't take the genetic test. My idea is to do it later, at an age where I could be closer to a possible onset of the disease, in about ten years, I would think.
I have told my story to show that I care, that we care. As I said, we are very private people, we talk little, we don't open up easily, but sharing our story, which can be the story of many, seemed to us the right thing to do.