Anybody know about Huntington's Disease?

[Blabbermouthy]

A friend of mine might have Huntington's disease 😔. She has decided not to get tested. She has a 50/50 chance of having it. She does not want to talk about it and is living her life for the fuller now (or so it appears on SM), which I fully respect. I'm not so stupid though to not understand behind closed doors she is suffering massive loss.

In my opinion she is showing signs aleady. She lacks empathy and her logic is way off. She gets very envious of others and finds it difficult to manage those emotions or even hide them. She didn't used to be like this. Even though she is being very difficult to be around she is still my long time friend who I want to see cared for. She lives on her own, has no partner or children so understand she will be feeling very alone with this as she isn't talking to friends about it either. She will also be facing the reality that she will never have children, because of the way the disease passes on. That will also be a grief she is suffering and she has taken aim at mothers as a result in really unattractive ways, self included.

Has anybody had experience of being a friend to someone with Huntington's Disease? How can you help somebody through a diagnosis like this when they don't want to talk and are shutting people out.

I've left her alone 😔 and just hoping she is processing the news in her own time and will work her way through it in her own way. However, I don't feel comfortable either just dumping her because she has difficult traits as a result of her possible diagnosis.

Any words of wisdom?

It's such a sad situation and I think she is coping in really unhealthy ways.

How would you cope op? I know you mean well but this is really one of the worst hands you can be dealt in life. I don't imagine I'd cope in a particularly healthy way either.

My friends dad had HD. He's in his late 60s but his quality of life is very poor and has been for many years.

My friend has chosen not to be tested so far and gets really angry when people discuss his health and try to guess if he also has it or not. If he's looking tired, if he's stressed at work and is a bit snappy with people, he dropped a glass the other day and everyone looked horrified. It's horrible to be in that position.

So first off stop assuming your friend has HD. You don't know for sure. Maybe she's just going through a bad spell. Maybe she's not. That's for her to share.

Then all you can do is be there. Keep in touch, be around, but don't be second guessing her diagnosis or offering her advice or helpline numbers. I'm sure she'll be getting genetic counselling if she wants it and I'm sure she'll be aware of the things she'll need to put in place for herself.

Just be her friend.

My MIL had HD. My BILs have it and are symptomatic. My DH has inherited it and has no symptoms and my children are all at risk.
My DH will talk about HD in general terms but until and unless there are symptoms, he wants to just carry on as normal. It's his choice, not mine.
Keep in contact with your friend. You don't have to mention HD - just regular texts or whatever way you usually contact each other. If she wants to talk about it, she will. You should follow her lead. There is support out there from her GP, specialists and the HDA if she chooses to access it.

@Ohmych* *it's shit and I am sorry that you are dealing with this. Wishing you many years symptom free.

My friend is still very much my friend ten years after diagnosis, in fact she's become more loving and we really treasure our time together. I think it's awful people suggesting that you walk away from her.

I would probably cope by going into denial followed by a reactive depression. I am under no illusion of how serious this disease is.

I understand your point about me diagnosing her, but she has a 50/50 chance of getting it and is showing symptoms. I've not brought them up with her. I certainly have not done anything other than expressed sorrow for her father and if she ever wants to talk she knows where I am.

I have not disclosed her symptoms here as I feel that's outing and not necessary to the post.

It is also very difficult to be a friend with somebody when their behaviour is mean spirited. 😕

I have experience of it. My dad died of it. My sister was violent from an early age but was only diagnosed at about 42. The violence was later linked to it.

Its a terrible disease. It tore our family apart for about 4 years. My db never got tested as he had 2 children. He’s 69 now, so unlikely to have it. My sister died from at at 52

I'm sorry if my post has triggered anything for you. Thank you for sharing your experience though it is helpful to have insight.

HD is a bloody awful disease. but there is a lot of research (the genetics are very well defined) and there are probably clinical trials going on in the UK. If your friend does see the GP and can get referred to a big neurology hospital, there is a chance of getting on a trial and getting access to drugs or therapies.

there are also better treatments than there were a few decades ago, so if your friend will engage will medical care, they can help

here is one example clinic
https://www.ucl.ac.uk/ion/research/research-centres/hd-centre/hd-clinic

My dad has HD and I'm at risk. We found out 7 years ago and it was a bolt from the blue as while we knew it was in the extended family my grandad passed away before becoming symptomatic so we didn't know our family was at risk. My dad is the only one of 4 siblings to be affected.

I understand all too well what it is like to care about someone with this disease and how difficult it is to support them when their behaviour isn't very nice but please don't give up on your friend. All my dad's friends and most of his family have distanced themselves from him and us and it is a lonely and isolating place to be. HD needs lots of support for both the affected person and their carers/family. No one understands what it is like unless they have lived it and it's not something that can easily be explained.

I follow a lot of people on Instagram who have lived experience of HD and that helps me a lot. There is a very good book by Erin Patterson who has the HD gene herself and it is an anthology of different people's experiences which is worth a read.

I don't know what the future holds for me and I am trying not to think about it, just live my life as best I can.

Hi there, I’ve got Huntingtons. It’s possible to still have children and not pass on disease. Feel free to ask me anything.

Every child has a 50% chance of inheriting the disease

You have to support your friend where she's at now, even the possibility is a shock. That's enough gor her right now. Just support that much at this point.

There’s iVF for Huntingtons gene carrying people wanting children, plus in Scotland they can now tell which ovaries have HD gene before implantation. Check out the Scottish Huntingtons Association page or HD Buzz page for info.

Because if either of her parents has HD, any kids have a 50% chance of also having it.