Should I tell my friend I think she might have a hereditary degenerative condition?

[Whine]

Apologies for the title- I had no clue how to start this and I’m upset and don’t know how to best word it.
A very good friend of mine is at hereditary risk of a degenerative neuro disease. (Similar to Parkinson’s). She wrote a letter to me the other day and her handwriting has changed. What do I do? Should I mention it? It won’t help in terms of proper prevention (hereditary) but the earlier stuff is caught the better, right? To prevent further degeneration? Her dad died ridiculously early from it having had an awful time. What should I do? What if I mention it and she knows but is ignoring it? What if I mention it and nothing can be done? What if I’m wrong and I panic her unnecessarily?

@Swingbin

Surprised to see that people are still writing letters. I don’t think I’ve received a handwritten letter since my grandmother passed away years ago. Why isn’t your friend on email?

What does that have to do with anything?

You can have email and still choose to write the occasional actual letter.

Don’t tell her. I’ve seen people become suicidal when they realise they’ve got an incurable genetic illness. Unless/until there are safety concerns best to live in blissful ignorance in my view.

Remember as well you could be wrong. A bit of dodgy handwriting is not a lot to go on.

If she has chosen not to be tested then I do not see there is anything to be gained by telling her your suspicions and am firmly in the MYOB camp especially if you want to stay friends

The majority of those at risk of HD decide not to take a DNA test. Unless the issue is causing a safety issue or she raises it, please leave things be. Whilst medications can help with symptoms, nothing can currently halt or prevent the disease. If she prefers to ignore early possible signs so should you.

Please don’t, the only evidence you have is her handwriting on one letter, which you can’t be 100% sure that she wrote (although more than likely that she did). You don’t really have the full picture and to leap to that conclusion. I speak from experience having seen my father go through the same. Seeing the change is heartbreaking and confronting that with the person, (which is done from concern and a wish to help and want the ‘old version of them’ back) will most likely awaken a great deal of fear within them. I’d leave that conversation to those who are around her more and may know better how she feels about her HD risk and how she wants to take things.

Totally agree with pp , if she has declined testing then she obviously is not in a place where she wants to know whether she has it or not so you will not be helping her . If you have a parent that has Huntingdons do you really not think that you are hyper aware of every little change in your capabilities . Seriously OP stop being stupid , your friend obviously , for the time being , wants to live in blissful ignorance so let her / him do so .

I have an acquaintance with an identical history to your friend OP. Her way of dealing with this has been to try and enjoy life as much as possible- she chose not to have genetic tests as felt she couldn't cope with knowing exactly what her future held if she got a positive result. Your friend has also opted out of 'knowing' and it's not your place to change this

I wouldn’t say anything. There’s currently no treatment to slow down or delay the onset and a lot of people do not want to know. She may be concerned herself or she may completely lack insight, which is common in people with Huntington's Disease. I would just be there for her, maybe gently ask her if appropriate if she is worried about symptoms and support her, but she may not be ready to have it pointed out to her.

There is potential disease altering treatment now - a trial of a substance altering the protein that goes wrong in HD. Pilot studies have shown some amazing results. Long way to go but look up Prof Tabrizii at National Hospital for Neurology. I know that it is a terrible dilemma, but the people on this thread saying that there is no possible good from knowing, are simply wrong.

When she chose not to be tested there was no hope. It's different now.

Thank you massively to this that have shared their thoughts, particularly those who know HD. I’m hugely grateful. I get why she’s made her choice about knowing. But clearly I need to do some more research in terms of progress/outcomes because I genuinely thought early intervention helped but if it doesn’t I can totally see why not wanting to know makes sense- if it makes no difference then what’s the point? Before that I’d almost decided I was going to have that chat (obvs with a ‘tell me to wind my neck in/we never have to talk about this again’ disclaimer).
And yes she does have family but clearly they are at equal risk and I know them less well than my friend. That would be a horrendous overstep?!
And I don’t think it was a rushing thing re the handwriting- it’s gone spikey and shakey when it used to be round and smooth.

huntingtonsdiseasenews.com/2020/01/20/after-diagnosis-huntingtons-patient-finds-hope-participant-generation-hd1-trial/

I feel like you disagree with her decision not to get tested and are being hyper vigilant for symptoms. This is not your decision to make or any of your business.

I feel like you disagree with her decision not to get tested and are being hyper vigilant for symptoms. This is not your decision to make or any of your business.

This is how it reads to me as well. Either way it's really shitty of you to publish such personal and identifying information on the internet about someone you supposedly care about.

You sound like a very caring friend and if I was in that position I'd want to know

[quote similarminimer]huntingtonsdiseasenews.com/2020/01/20/after-diagnosis-huntingtons-patient-finds-hope-participant-generation-hd1-trial/[/quote]
That’s great but it’s unlikely it will be available to the OP’s friend.

How often do you write?

If I'm writing a letter (so I want the other person to read!) I write it far more carefully than if I'm scribbling a note to myself.
But with my careful writing, I actually don't have one particular style, so I'll choose which one to use.
I've had people with 3 different things I wrote in front of them swearing that I couldn't possibly have written all three.

No with bells on. Her dad died from it so you would be stating the obvious. She probably already knows.

The gene silencing is in its infancy, still working out how to get it to cross the barrier to the brain. Whilst it is positive news, it is still a long way from being a 'cure'. I wish I could say to my family don't worry, there will be a cure/treatment soon. Mind you, the genetic consultant did hold our hands 20 years ago and told us she was sure that there would be a cure in 10 years....
OP thank you for taking on board others views, the HDA website has some really good resources and videos and also HDYO is good for young people up to 35. Huntington's receives no government funding at all and these 2 small charities do a fantastic job of trying to raise awareness of Huntington's and supporting families. SHDA for people in Scotland.

Eh? Whilst I’d probably (not been there so can’t be certain) have made a different decision if it were me about testing, that’s because we’re different people and I’d be living constantly imagining the worst anyway so I’d rather know- that absolutely doesn’t mean I think she’s made the “wrong” decision. It’s totally hers to make and they are some sweeping ‘feelings’ you have. I hope I’ve put over that she’s a very good friend of mine and I love her to bits but that was the whole point of me asking for advice- If I should wind my neck in because it’s none of my business I’d rather mumsnet told me to than my friend having to, after being put in a doubly awkward position?

@similarminimer that’s really interesting. I actually know some of the team involved in that study but hadn’t realised things had gotten that far.

However, I think the general advice stands: this is someone who has chosen not to be tested, not someone who is trying to know everything and get involved in cutting edge research.

You have to be quite certain before giving someone this kind of “hope”. It can really backfire. She gets tested, is positive, but then doesn’t qualify for the trial because these things have strict inclusion/exclusion criteria...potentially horrible situation to be in.

It depends how close you are and the type of person she is.
My DH tested positive for it at 30 (10 years ago). He has no symptoms. Yet. When we talked about his sibling's driving deteriorating and how we are all a bit hesitant to talk to them about it because they're quite defensive/hot headed(usual personality and not a recent change, so not a HD symptom in this case), he said if/when this happens to him, he wants me to tell him. We've had discussions about it all. But, I can't imagine the fear of waiting for all of this to happen to him and when you're experiencing it, how welcome will those comments actually be?
I'm sure you're friend is well aware of any changes and might actually be in contact with their doctor about it, or fully burying her head in the sand. Either way, just be a listening ear for her, as supportive and non judgmental as possible.

She doesn't want to know, so don't mention it. If there is any trial that can help, I'm sure her and family will hear about it before you.

And keep in mind these trials are often at the very very beginning stages, they may not help and sometimes don't even intend to help (testing out whether a certain drug/dose is toxic or not). If they do "work" the effect on life extension may be measured in weeks or even days, not years (often the case for cancer treatment trials). So it's not get on a trial = yay I'm cured.

I am finding this thread massively triggering. Please don't tell her. I am in the same position of an hereditary condition that my father, uncle and grandfather had. Not HD. My children at risk too. Every time I have had the chance for a diagnostic muscle biopsy i have pulled out. I have decided to live in blissful ignorance as I am scared at passing on to my children also.

If she wants to know she can get a test. That is her choice. I am sure if it is HD she has other signs. Please don't push her. She may want to remain ignorant to to the risk.

Is this a one off note or every piece of recent writing?? If I write quickly then it literally looks like completely different writing to if I do it slowly and carefully.

Also, I would imagine that she's alert to possible signs herself to be honest

Grandmother not grandfather