Should I disclose my suspicions?

[Wingedharpy]

Posting here for traffic.

Should I tell my DH's family that I think he had an hereditary condition even though it hasn't been formally diagnosed?

They wouldn't have any health risks from this condition but could be carriers and may have passed the gene on to their children, who may also be carriers.

25% chance of 2 carriers having a child with the condition which would become evident quickly and is treatable - although it would need lifelong drug treatment.

YABU - say nothing. Why worry other people when you have no diagnosis.
YANBU - of course you should tell them what you suspect.

Just to clarify, DH has sadly died so is in no position to tell them himself.
The condition did not cause his death.

Do you think or know he had am hereditary condition?

I think the answer to that would influence my decision.

Are you close to his family? Would they be receptive to the news?

Depends entirely on the kind of relationship you have with them.

I have a good relationship with all of his family.
There are medical professionals in the family which I think, makes a difference.

Can you talk to those medical professionals before anyone else and see how they react to your suspicions? If they agree, they may be able to help advise on any tests etc which affected members may need.
They may disagree with your conclusion , and that may also give you an idea how to proceed.

If you do go ahead sound it out on just one or maximum two of them who you feel more comfortable with. It really need not be a family announcement - so to speak. Also a lot of the time it's really how you say something as opposed to what you say iyswim?

Is it not possible they know anyway?

Seek medical advice before doing this.

What makes you think he had the condition and why wasn’t it raised or investigated at the time you became aware of those factors? And how sure are you?

I wouldn’t tell them ‘I think DH had X condition’ unless you were sure, but I suppose it would be okay to say, ‘DH used to have Y and Z symptoms and when I’ve googled it said they could be linked to X syndrome, obviously it could not be but I felt I should pass it on to the family.’

I think you should share this information.

@Leeds2 Read the thread - her DH is dead.

Ffs, at least read the Op......
DH died.
Jesus

Maybe you can arrange a séance?

Ffs!

OP, what are you basing this on? What is the condition?

If you have a medical background and good evidence this is the case, then yes, I’d tell them. If it’s based on something you read on Facebook, then probably not! I’d probably discuss my thoughts with one of the medics professionals first.

Is it something that they could get tested for to rule out/ in whether they have it or not?

you had a death certificate?

are you close to any of them?

have a chat to the family - can they get tested?
or at least they can make a decision

Is it something they can realistically test for? If not I wouldn’t mention it, I can’t see what good it could do. Different if they can test for it though. Is there a reason this didn’t come up when your DH was alive and why he wasn’t able to get a diagnosis?

I am so sorry. I can't explain why I didn't take that in from the OP. Please forgive me, it really wasn't intended.
I will ask for my post to be deleted.

I'd want to know if I were a family member.

Oh dear @Leeds2 .
I do hope you don't work in a public facing role!

Thank you all.
It's been helpful.
I will share my thoughts with his siblings - all 8 of them because 7 are medical folk and 1 is a dinner lady so I wouldn't leave her out.

It won't affect them but could have implications for their children and potential grandchildren.

Cross Post @Leeds2 .

I forgive you🙂

I would share, especially since it could save heartache further down the line and is a treatable condition.

That's a lot of siblings your dh had!!

Firstly, sorry for yiur loss, my DH died 6 years ago and I know how tough it is.

Ref your Q though, even if you're wrong, there is no harm in getting this checked out, so YANBU to tell them.

My sis has just been diagnosed with a very rare autoimmune prob. The GP initially thought it was vaccine related, but it's genetic. We think my dad might have had it, I need testing and poss my brother too. It affects you from 50yo. I'll get checked and I have it, I'll ask that my kids are tested for the gene.

My SGD was born with a heart defect. My SD was really shocked until she spoke to her dad (my DH) who said it was in his family. They'd never talked about it! Shocker. Next week she has her 4th heart surgery - she's 10yo - this time, they are replacing the valve. Knowing wouldn't have changed things but the shock of my DS finding out her new born needed heart surgery would have been better managed had she been aware.

My 2 x DN have heart probs which are genetic from their dad too. They go fir regular check ups.

Finding out you have a genetic problem means you can start working on elevating it immediately, but if they turn out all clear at least they'll know.