Article, Huntington Disease
When you spend years of your life hiding something (that Huntington’s was in my family) that feeling of shame sticks with you. Even after I made the decision to stop living in secrecy it was still there, accompanied by a huge amount of fear. So every opportunity I...
Article, Huntington Disease, Positive Living
I have a rare disease, well not quite yet, but I live with Huntington’s every day. I am gene positive for Huntington’s which means I will get the disease one day I just don’t know when the symptoms will start. That can make it hard to fit in. I have this bad thing...
Article, Huntington Disease
Amazingly my dad just turned 80 this year. He has late onset Huntington’s. His symptoms didn’t start until he was in his late fifties, although it is only in hindsight that I can say this. I didn’t know what was going on at the time because HD was kept a secret in my...
Article, Huntington Disease
I kept my diagnosis as gene positive for Huntington’s disease a secret for over ten years because I was afraid of how people might react. I thought I would lose my job, I didn’t think people would want to be friends with me any more. I was terrified of ending up...
Article, Family Planning, Huntington Disease, Mental Health, Positive Living
These days as my father’s Huntington’s disease progresses and I take on more and more, I have learned how quickly being a caregiver can consume my life. Yes, he is still living two hours away and I don’t take care of his day-to-day needs, but I do everything else for...
