Thread: Hello
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Old 04-08-17, 11:49 AM   #2
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Join Date: Jan 2015
Location: Berkshire
Posts: 371
Default Re: Hello

Originally Posted by Maia burnip View Post
I'm also new to this forum not quite sure how to use it but thought I would give it a go. I'm 19 years old and live in the south west (Devon). My dad got diagnosed with HD about 6 years ago since then every thing in my life turned upside down. I've lost the dad I've grown up with he's gone from running marathons every year to being in a care home with care needed most of the time. The saddest thing is, is that the worst is yet to come. I have always struggled to come to terms with this crippling and soul destroying disease. I always ask my self why did this have to happen to my family? I long to have a healthy dad again and it hurts me to see friends and other family members with there dad. The worst part of this disease to me is the icolation it has caused me I never belevied I could feel so alone. I've never met anyone who is going through what I am so perhaps this is why I've joined this page. I'm so sick and tired of feeling this way. I know this will be with me for the rest of my life and he won't get better but I need to learn how to cope.
I am so sorry Maia about your Dad.
it can be a very lonely place you sound like a lovely caring daughter have you looked up your local support group / HDA branch are you in contact with your Specialist Huntington's Disease Adviser for the area . ?

This may help to be able to meet with others in similar situation x

I will find some info if someone else doesn't do it first

Take care

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