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Juvenile Huntington’s Disease Forum concerning all aspects of JHD

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Old 23-06-16, 10:49 PM   #1
nightowl
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Default Visit to HD symptomatic birth relative?

Any experience of children meeting a significant adult relative ( for the first time)who is fairly advanced in HD symptoms. Chorea. Voice.mobility limited etc. Not sure about behavioural, but is in supported housing.
It maybe the only time they meet if we ask for it to go ahead. The children have had no exposure to people with HD symptoms nor has it been voiced as an illness or possibility for them yet.They are 6 and 4. Have had access to and provision for kids with special needs due to elder one being truly very aggressive , demanding, and controlling etc.(no diagnosis)
Just pondering....it .thanks all. Its not something I can put out there for general chit chat.
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Old 28-06-16, 03:04 AM   #2
shiraz
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Default Re: Visit to HD symptomatic birth relative?

Nightowl.....I have just stumbled across your post. I know the MB has been very quiet for months now but I still check in daily and honestly haven't noticed your post before....as I suspect others haven't - another that has gotten lost in the clunky old system.

I can't really answer/reply constructively however as I don't have children or past experience of hd but I can say - from what I have been told/seen on tv - that kids generally deal with disabilities and physical differences really well - yes they may well blurt something out, but it is only to find out and not in shock and horror.
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Old 29-06-16, 10:43 PM   #3
nightowl
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Default Re: Visit to HD symptomatic birth relative?

ThNks Shiraz, that was my thinking. I suppose I wanted to offer the children something to look back on and have memorable photos. It will also with open up the conversation about HD as they get older to understand it a bit.
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