Huntington's- any experience?

[bigbluestars]

I have just learned that my DS good friend ( both 17 yo) is at risk of carrying this gene.

I knew that his mother is in a care facility and he lives with his father. He can't be tested until 18- he does want to have the test when he is legally able to.
I feel for him so much-so young to have this massive potential problem hanging over him- how can a teenager begin to process such information?

His own mother became ill when she was 32 years old and he was a young boy.My DS has gone for a sleep over at this fiends home. I know his father does an amazing job ( never met him)- but I am struggling to know how this small family copes with such a horrible situation.

has he had counselling about having the test?

Thanks for replying.- I don't know. He is quiet shy boy so possibly unlikely to open up about such things.

My mother has this, and I've known of the possibility of this since my GM was diagnosed when I was 9 years old.

I have chosen not to be tested.

It used to bother me, lots of counselling etc. Working as a health professional has provided a massive reality check in terms of how you live your life with this possibility... there are worse things.

Really, it would be worse in my mind to be ill every day of your life from birth or a young age for example. HD sufferers can live a good life until it starts and for that I'm grateful.

What is shitty though is the mental deterioration, the personality changes, the dementia-like effects. This puts a strain on relationships.

The loss of independence is very difficult to deal with too.

But the world doesn't end, there is help and support and ways to achieve some quality of life.

oh and carrying the gene doesn't make you any less likely to be hit by a bus, or develop an aggressive cancer or have a stroke just like everyone else.

Really, nobody knows what the future holds. Gene tested or not.

never- thank you for that. I not in your situation, but I guess none of us know our future. My father died suddenly while young, my OH lost his brother at the age of 38- of course none of this was forseen. I really appreciate your perspective. XX

It is possible now to have ivf and for embryos without the gene to be selected without the parent even finding out if the have it also. Just to know their kids don't.

Developments in science happening all the time. Likely to late for me but maybe for my children.

I talk to the kids about granny when it comes up as I think it helped me not to have the info loaded on me as a surprise as an adult. The kids can see granny gets worse every time we visit and although I don't bang on about it, I've told them its genetic, like their hair and skin colors etc. It doesn't mean much to them right now though.

Yes, this is in my extended family. Two siblings in their 30s tested positive for gene after their mum died after a long struggle. Female has decided to have two children since being disgnosed but she (and her DH) seem to have a very head in the sand approach from what I can see. She hasn't been to her last two annual reviews and he hasn't made her.

Very sad and we can see her behaviour is spiraling out of control. Her DH thinks it's just her being awkward and moody though. They've never particularly liked each other so why they had two children is another thread altogether.

Both daughters (14 and 11) are unaware.

On a positive note it does seem like research is making giant strides towards finding a cure.

My BF has this and so did all her siblings (4 in all). Her brother died last year, her sister is v ill. She herself is living life to the full but is on antidepressants. She does a lot of charity work. She's 43 just now. There is no happy ending but my friend has embraced life and all it has to offer. She had 2 children who they never got tested. They are only 10 and 12. It's really sad. All he can do is decide whether to be tested and if positive, then try to live the life he has and get as much support as he can from the available patient organisations. I hope he is a negative result

my dhs mother has it, we have a dd so potential for them both to have it, we decided against the test for dh as we don't want a positive result hanging over our heads, if he starts to show symptoms we'll know what it is, dd was already born before mil was diagnosed. fil is struggling a lot but neither one will hear of a care home permanently we aren't in a position to help with care all we can do is offer emotional support , bil however seems to think fil brings all his problems on himself and after trying to put mil in a care home( she refused to stay there) has washed his hands of them, so now they have that added burden but again that's a whole other thread, and sometimes I wonder if bil behaviour and selfishness is a manifestation of the disease at work in him , he also decided against getting a test.
its a horrible slow disease that replaces the person you knew and loved with a tyrant you don't know.

I've got it I'm 45 I've known about it since I was 14 but didn't get tested till I was 29
I've got a dd of 16 and I wasn't quick enough to tell her and she told me when she did it in school
I've been symptomatic for 18 months x