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?

I wouldn’t be able to deal with the worry of “what if she hasn’t noticed?” and so would tell her. If her writing has changed gradually, she might not have noticed the differences. The frog in the boiling pot thing comes to mind.

While there is treatment for symptoms, no there isn't a treatment that slows progression or prevents further degeneration in Huntington's.

So you pointing it out won't mean she gets earlier treatment that could delay progression.

Has your friend had a test to know whether she has the gene or not? Some people in Huntington's families do and some don't.

If her handwriting has changed it's more than likely that your friend has noticed herself too.

Not everyone wants the test when offered. So she may not know for sure one way or another.

I’m afraid there is no treatment to stop or even slow Huntington’s. The treatments are a range of drugs to help with individual symptoms -the movement disturbance, psych symptoms etc...all symptomatic control but nothing which actually intervenes with the illness progression. So she would not be losing nothing by you keeping it to yourself.

Personally I wouldn’t want you to point out any early signs. She is already likely to be on a high alert. I think I’d want to enjoy as much of my life as possible before accepting the inevitable and might resent any early encroachment if I hadn’t noticed, or was successfully living in denial.

But that’s me. And I’m a psychiatrist BTW so have a good (but clinical) idea what it means to live and die with this disease.

I would suggest forgetting about the handwriting for now. But if you are close enough friends you could have a conversation about her wishes, “if I ever spotted any signs, would you want to know...even if you don’t bring it up/haven’t noticed?” “would you prefer to avoid thinking or talking about it for as long as possible, or is it helpful for you to chat about it and your general health?” But this very much depends on your relationship.

Are u going to mention it to her OP?

And yes, it’s not in doubt about her dad, just that she hasn’t been tested so 50/50 (I think). Trying not to get the arse with “surely she would know”-she knows, I know, her family and friends know. Not even nearly the same as having to grasp that you might be facing that too?

Sorry, my post above was written assuming she carries the gene and knows this. I’m not sure from the wording of the post if she does or not. It’s autosomal dominant so if she does carry it, she will get the disease; there’s no asymptomatic carrier state. It is a very cruel condition.

If she declined testing she probably doesn’t want to know. In that case I wouldn’t say anything. She is aware of the possibility and has chosen not to have the option of early knowledge with the slowing down benefits that brings. I completely understand your dilemma but I think she has demonstrated her preferences.

Nothing slows Huntingdon's does it? I'm sure she's aware.

If Huntingdon's I would proceed with the caution I and others have suggested.

My stepdad had Huntingdon's and displayed some of the angry outburst symptoms when challenged for quite a while before anyone really had clocked it was Huntingdon's.

So I would gently raise the change with her, not the illness.

Denial can be a huge thing so I would not assume she would be aware anyway but would respect her decision if she wanted to be in denial for a little while longer and not discuss the issue with you further after you gently raised it.

@Whine

In that case, if she has chosen not to be tested, that should tell you something about the decisions she is making here. I would not mention it.

Not sure if it'd be useful to bring it up on if you know she knows and she's choosing to cope in her own way.

I think she totally understandably doesn’t want to look it in the face unless she has to.

Then maybe you should respect that.

She obviously must know there's a risk of developing it and people cope in different ways.

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?

Please don't. I would love know what early intervention slows down Huntington's - clue, there isnt any. Gene silencing is being researched, so there is hope, but when? Please be there for her if she wants you to be, but don't raise it if she doesn't. Believe me, once there is a positive gene test result, every little little change, tic, headache, depression is potentially a sign of becoming symptomatic, you have also watched your family members go through it. You do not want people telling you - you already know.

Also - Huntington's develops over many years and is very different from one person to another.

If she does have it, how she is won't necessarily be similar to her dad. And there may be a very long time when it is just dodgy handwriting.

As someone from a Huntington's family she prob has strong opinions on what she wants to do and know if she does develop it.

Say nothing as it won't help. I lost a very dear friend to Huntington's a couple of years ago. He knew from the start.

If it was a close friend then I would mention it in the kindest way possible. And say you understand if she doesn't want to talk about it, and you understand if she doesn't think it's worth worrying about it. But yes. I definitely would say something.

I would mention it to her. I spoke to my great uncle on the phone one day and noticed he was slurring his words. My mam brought him to the doctor and he had motor neurone disease. They caught it early, and while there was no cure, they were able to offer early help.

Sorry I thought she had the test. If she hasn't (and a lot of people at risk don't as there is nothing that slows the disease down) I would say that she has a made a choice about how she is going to deal with it.

If it's on the basis of handwriting alone - no don't raise it. A lot of peole don't need to write these days so handwriting has gone downhill for some. I'm a teacher and write daily but all those months of lockdown and setting work and giving feedback online instead means I'm very out of practice and my handwriting is shocking by comparison.

Could you just tell her her handwriting has changed but not mention anything about why and let her come to her own realisation if she doesn’t already know?

@magicstar1 unfortunately there really isn’t any “early help” available for HD. Noticing it early (or having it brought to your attention early) just means living with the misery longer.

You mean well obviously OP but now that you've said she declined testing, best to just keep quiet about it. I faced a similar situation as your friend. The last I needed was someone, even with well-meaning intentions, mentioning it to me. I had to come around to it myself when I was ready.

maybe she was just in a hurry when she wrote the letter.

doesn't she have family that you can talk to? family who are more than likely aware of any deterioration and would not appreciate you totally freaking her out by making assumptions based on something as flimsy as untidy handwriting.