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Testing, or at risk Discuss testing for Huntingtonís disease, and living with the risk of HD

 
 
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Old 23-04-18, 03:26 PM   #1
lucybee
Approved Member
 
Join Date: Apr 2018
Location: Glasgow
Posts: 9
Default New to forum- looking for some advice

Hi there, Iím new to the forum Iím just looking for some advice.

Just over a year ago my mum was diagnosed with HD. We had known something was not right for about 6 years and doctors reckon thatís when her symptoms started. After my mum was diagnosed my grandfather who has now passed was also given a positive diagnosis, his HD was very late onset therefore did not develop such severe symptoms. My mum has 4 siblings none of which have inherited the gene.

My mums symptoms have gotten a lot worse and I can see her slowly loosing herself and struggling more each day. Iím the eldest sibling out of 3, Iím 19 years old, my sister 18 and my brother 14. We do not have a father in the picture as he passed away when we were young. Iím struggling to cope with looking after my mum and to look after my siblings and trying to make everything seem normal for them. Alongside that Iím absolutely terrified of inheriting the gene. I have developed terrible anxiety and even the slightest twitch before I go to sleep or shake in my fingers leaves me petrified and convinced I have HD and this is the start of it. I donít think I am in the right frame of mind to go for genetic testing because a positive result would completely kill me.

Does anyone have any advice on how to make my home environment still be a happy place? Me and my siblings are struggling to stay positive and my mum is feeling very down about it all. Im just finding it really hard to cope at the moment and struggling to see my mum turn into somebody I donít recognise. Iím trying to stay positive for my siblings but itís so difficult to take care of everybody all the time and constantly worry about what the future holds for us. Any advice anyone has on how to cope living with someone with HD or how I can still make it fairly normal for my siblings? especially my young brother).

(Didnít realise I had written a novel!)

Thanks!
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