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?

Anyone who has/had a parent with Huntington's knows they have a 50/50 chance of having it themselves. Don't interfere.

You can't know what you would do about testing unless you are in her situation. Please don't say you're different and you would. This literally changes everything for someone. They need to be in the right place to take it on for their own mental wellbeing.

My handwriting is appalling all of a sudden - wrist sprain from too much typing. There can be many other reasons. Ask her how she is, open conversation but I wouldn't say anything based on one thing. It's lovely you care so much about your friend.

If this was my best friend I absolutely would. She is like a sister to me and I know she would absolutely raise it with me too.

If she’s declined testing this might be her last chance to jump start her in to having it.

Rambling words - seems a paternalistic approach to me - I know something you probably don't, about your health and relevant changes in the field, but I choose not to tell you.

@SugarPlumFairyCakes

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.

We were told similar by the genetic consultant @SugarPlumFairyCakes, and well meaning family/friends. Agree - HDA are great. Local support group was so helpful for PIL. I really need to utilise their website more. I remember they had helpful articles/literature for telling children and must read it again.

Tell her. She is your friend.

The mind your own business stance on MN is weird. In RL people actually give fuck about each other.

If some suspected they may have skin cancer and you watched the spot get blacker and blacker you would absolutely say ‘that spot is black please get it checked out’

A good friend that noticed deterioration would say so.

Ok, given the updates, and she is clearly a good friend, I would ask her if she would want you to tell her if you spotted any potential signs and go from there.

Negative Nelly here, also worth pointing out that HD sufferers whose cognitive function is impaired and have physiatric symptoms are often not able to participate in trials as they are deemed not to be able to give informed consent and outcome measurements can not be quantified. These symptoms are often hard for the families to see and deal with.
OP I do see you as trying to understand what over-shadows my world. Thank you for trying to understand. Many don't and
HD families struggle to get even medical professionals to understand the human aspects of the disease.

@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?

Because a handwritten letter is more personal, a piece of the person, unlike email.

I have a friend whose Dad died of Huntington's so he had a 50% risk of getting it but he doesn't want to know. He and his wife had a baby and had pgd to make sure the baby doesn't have it but without finding out if he was affected.
I understand why people don't want to know as there is no cure and probably having watch a family member go through it don't want to know they have the same fate.
Maybe call for a catch up but I don't think I would point out something she probably already knows.

it's really shitty of you to publish such personal and identifying information on the internet

Come off it, stop being so unpleasant. The OP is worried for her friend and doesn't know what to do. She's come on here for help, not a kicking. There is no identifying information in the OP's posts at all, so I think you are being unnecessarily harsh here.

There is a chance cancer can be cured. There is nothing at this point that can cure HD. Testing is a deeply personal decision and yes, people can become suicidal when they get the result. You have to have counselling beforehand and many people prefer not to know. Their choice - you cannot jump start a decision FGS. If I could go back in time I would not have found out, although equally, would not have had DC if I would have known before, that is how much of an awful disease it is - and how families have to come to the right decision for them, which is not necessary the same decision as their siblings, cousins, aunts, Uncles, everyone who has that 50/50 risk.

Normally I would say 'tell her'

However given she's chosen not to be tested and there's no treatment I wouldn't say anything.

It's not like she doesn't know it's a distinct possibility.

@similarminimer paternalistic entirely depends on your point of view. If the person has chosen not to be tested (or pursue any trials) and you still decide for them that they should know everything, and have their early warning signs pointed out, then that would be paternalistic. Paternalism means making decisions for others, including the decision to know or not know.

The priority here is what the potentially affected individual wants. None of us know, but the fact that they have had genetic counselling and decided against testing is a clue. The OP would be sensible to take that into account and tread very carefully.

Also, raising hopes about treatment trials can be really harmful. People can waste years of their remaining quality of life chasing unpleasant treatments, doing so because they feel obligated to others to “be a fighter”.

None of this is black and white.

Can you tell her what you noticed ('Your handwriting looks different') rather than mention the illness? That way she can brush it off or talk about it.

I think you should mention it. However I have found that my own handwriting has deteriorated badly and I think it’s just because I hardly ever write anymore.

@Byallmeans the comparison with skin cancer is not useful. Completely different situation, not in any way analogous.. Anyone who knows anything about HD would know that giving a fuck about a friend in this situation could well mean respecting their choice not to know. It’s a straightforward test, a potentially affected individual can take at any time. If you carry it, you are definitely going to get it. If you don’t, you won’t. No ambiguity, no “might’. Choosing not to get the test means you have chosen not to know. After making that choice, deciding to live life without that knowledge, pointing out early warning signs could be a pretty shitty thing for a friend to do.

After 5 months off work and not having picked up a pen in that time, as everything I do is online at home, my handwriting on my first month of returning to work looked as though I had the pen clamped in my first like a crayon. And it really hurt to hold the pen, never mind write with it.

I don't think it's the right time to be pointing out how bad somebody's writing is and diagnosing a progressive/terminal disease on that basis.

Again, thank you. I don’t know how to say that properly to those that got what I meant and/or have personal experience of it. Sorry it’s brought up issues I hadn’t foreseen. And I’m so sorry it triggered anyone reading this. If it hasn’t come across properly so far my friend is awesome and this is one very small portion of her life- it def doesn’t define her (as it shouldn’t).
Also thank you (I have no idea how to tag)- I’m simple so surely anyone that cares wants to understand how it works/how best to help.
And just to be clear- her cognitive function is better than mine, there are no concerns like that- I ring her regularly with ‘help me figure out this shit situation or slap me if I’m being a dick please’ so no worries about that!

OP - Huntington runs in my family. Thankfully for me my mother didn't get it so I am not at risk. But my uncle had it and died of it. Out of the 5 kids potentially affected only 1 chose to get tested and the other 3 didn't (1 inherited the disease). In our experience it does get worse with each generation in that the symptoms start sooner. Having said that there have been fantastic progresses made in the medical field to slow down the disease. So if she was my friend I would mention the handwriting in passing and let her take the next step if she wants to. And be there to support her.

Also - her cognitive functions will be the last being affected by the disease so yes it is likely she is more than aware of everything but sometimes we try and ignore the obvious.
She's lucky to have a friend like you.

my handwriting has changed due to arthritis. Maybe it is something unconnected to HD

Tread carefully

Oblada progression and symptoms vary within families. Some sufferers get the cognitive or physiatric difficulties first and some may never develop the movement disorder, or not until the last stages of the disease. It really isn't a disease where you can predict how and when people will be symptomatic. Honestly, if someone after watching their family suffer, doesn't want the test, their decision needs to be respected. They will be symptom hunting anyway and bringing into a conversation uninvited could scare and distress them.