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Here's my story

United Kingdom

Hiya, my name is Mollie, I'm 13 years old and I've decided to share my story with you guys. My dad has Huntinduns desiese and he got diagnosed with it when he was around mid 30's if i remember rightly. He told me about it when I was in year 5 so i was about 10-11 years old. I was only young like i said so i didnt really understand properly, but as I've got older I have learned more and more about the desiese I found out that because my dad has the desiese that means that I have a 50% chance of having the desiese when I am older. I'm not going to lie when I think about that it does scare me. I dont really like thinking about HD but it's right there in the middle of my life so I can't really help it. My mum (who doesn't have the desiese) and my dad (who has the desiese) split up when I was only very young and now I live with my mum and my step-dad who are both very loving and supportive. I go to see my dad (who has HD) at least once a week after school but recently I have been noticing some changes, for example he may stumble and trip very easily and he will ask me things over and over again, this upsets me because I think "that's my dad and this is happening to him! My own dad why does this have to happen??" Lots of stuff like that. But do you know what it's okay to think that stuff! When me and my dad would go out for a walk sometimes people would stare at my dad, and I would feel embarrassed but that's normal it's okay to feel like that! I cope quite badly with thinking about HD thats why I have started to get counselling at my school and I had a counselling session the other day and I organised to have counselling once a month at school, counselling really helps because you can just say what is on your mind and let it all out. This weekend just gone I went to a family party and my dad's (the dad who has HD) brother has HD really bad, for me it's hard to be around people that have the HD symptoms really bad because I think that "that's going to be my dad one day" I got home from the party and my dad (the one who has HD) texted me "i hope you enjoyed the party today Mollie!" And that set me off I just started crying and that's when I turned to this website on the internet, i knew this website was a thing but I find it really hard to talk to people about HD but I guess here I am writing out my story! It really does help letting out your feelings like this.
If I can get you to take anything from this is to not be ashamed to feel embarrassed or anything like that it's normal!
Feel free to write a message back to this!
Mollie x

United Kingdom
Life is to be lived
Young adults Forum support

Hi Mollie

What a nice post you made! That's really brave of you and I'm glad you've done it. You're so right, it is ok to be embarrassed sometimes. It's normal not to cope very well with HD, it's a really big thing to have to deal with and coping with it will take time. Great to hear you are using the counsellor for what they are there for :) What would you say makes it difficult for you to cope with HD at the moment?