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Seeking advice, and understanding.

Young adults

Hi all. I am just looking for advice or even just some comforting words. My story is kind of strange. My mother was diagnosed 5 years ago when I was 14, and she still hasn't told me about it. The only reason I know is because I knew something was wrong and went through her phone and saw a text message to my aunt about her diagnosis. Whenever I tell people this, they always wonder why I haven't talked to her about it yet, and the truth is I honestly don't know. My family does not deal with things. When my grandmother had alzheimer's when I was younger, I was told I wasn't allowed to see her, and we did not talk about her. I watched my parents marriage fall apart and now am trying to deal with the fact my dad, who resents my mom so much, try and deal with her. He told me himself the only reason he stays married to her is so he won't lose half of the farm in a divorce. The person that my mother has become, I'm not sure if its the disease or what... she is cruel, and mean. She will say hurtful things to me and when I try and defend myself and speak up she turns it on me and then cries, and when I was in high school it was usually her kicking me out of the house. Now, when I come home to visit from school, I watch her deteriorate more and more, and there is nothing I can do. I feel so helpless. So while dealing with this, I'm now struggling with the decision to get tested for the gene. I feel like I'm drowning.

Things happen for a reason
Young adults Forum support

Welcome to HDYO perehudoff!

Thank you for sharing your story. Many of us have gone through similar experiences. Here is a great article that discusses what it is like living in a family with HD -

This is a great place to start building a network who can understand what you are going through. Testing can be a tough process, but it is very individual. I would suggest talking to a counsellor to see what is right for you because they can answer all your hard questions.

Have you heard about the upcoming North American HDYO camp?

Canada also has a great network of youth that you can be involved with - YPAHD -

Hope this helps! From Ontario :)


United Kingdom
More support is always needed!

There is many support groups across the world with many people in your situation so I hope you find as much help and support on this website! smileygb