Should t1s be advised not to have children?

[Smallbrit]

In answer to the original post and the controversial title, 41 years ago, people - GPs and family - did give my mum advice on T1 and pregnancy, although it was mainly to do with her health not with mine. She was told not have children because
- she was T1 diabetic and pregnancy would be dangerous
- she was deaf
- she was old (40!, which was ancient back then!)

The 3 points varied with importance depending on who was giving the advice.

On behalf of myself, I'm very glad she ignored everyone. I absolutely agree with you that it''s a good idea for a person to be knowledgeable about hereditary illness so they can make informed decisions on how they plan their own lives, but no - I don't think it's an absolute that people should be advised not to have children just in case they pass things on.

I firmly believe in medical and societal progress. I wouldn't want the deaf world my mum had 40 years ago, nor would I want her type 1 treatment of old, but I'm not going to have to face either of those worlds either. Technology means I can almost hear perfectly, even though I am now just as deaf as she was when she had me, and I can communicate by text/online on an absolute level pegging with other people. None of that was even imaginable then, or even in my childhood, for a profoundly deaf person. My children may go deaf or have diabetes in the future, but I can't begin to imagine what will be available for them. I do think it will be better for them than for me.

Oh, and I agree with everyone else - early years parenting is an enormous emotional struggle. That bit does get better. Spoken as a mum of an 8 year old and 11 year old.

 

[Ambersilva]

@ExtremelyW0rried

You have opened up to us regarding your ongoing concerns and issues. If you also open up to your GP, Diabetic Team and CAMHS you will get the support you need.

 

[Sonnyb2]

I think they should. Getting t1 is a total disaster and ruins your life. People should be advised if they are t1 you have a ridiculously high risk of passing the condition on (1 in 25) and then make a decision based on that.

No one gave me any advice on the risk and I'm very sad about it. If I'd known I absolutely would not have selfishly had children and put two more people on the planet with t1 genes.

This is not true

 

[Robinredbreast]

I think they should. Getting t1 is a total disaster and ruins your life. People should be advised if they are t1 you have a ridiculously high risk of passing the condition on (1 in 25) and then make a decision based on that.

No one gave me any advice on the risk and I'm very sad about it. If I'd known I absolutely would not have selfishly had children and put two more people on the planet with t1 genes.

I had my daughter at 42 years old, she is a healthy and a wonderful 17 year old ( well most of the time ) I disagree with your post and don't like it at all ................. nuff said

 

[ExtremelyW0rried]

I had my daughter at 42 years old, she is a healthy and a wonderful 17 year old ( well most of the time ) I disagree with your post and don't like it at all ................. nuff said

Would you feel the same if you'd been one of the unlucky ones and she was t1? Easy to say if the gamble has paid off I think.

 

[TheBigNewt]

Would you feel the same if you'd been one of the unlucky ones and she was t1? Easy to say if the gamble has paid off I think.

Anybody can be unlucky and have a Type 1 diabetic kid. Neither of my parents had it and I got it at age 32. It isn't genetic. It's a random, acquired autoimmunity triggered disease. None of my 3 kids have it. My friends' kid got it at age 5 no one in either family ever had it. There's no gambling involved. And PLEASE, don't bore me with Googled internet garbage that says it's inherited. It's not. There's no "diabetes gene" dude. End of story.

 

[ExtremelyW0rried]

Anybody can be unlucky and have a Type 1 diabetic kid. Neither of my parents had it and I got it at age 32. It isn't genetic. It's a random, acquired autoimmunity triggered disease. None of my 3 kids have it. My friends' kid got it at age 5 no one in either family ever had it. There's no gambling involved. And PLEASE, don't bore me with Googled internet garbage that says it's inherited. It's not. There's no "diabetes gene" dude. End of story.

They've identified the genes that carry an autoimmune risk (not specifically diabetes. Autoimmune genes cover other things too). Trial net specifically test people with first and second degree relatives who have t1 because they are. Ore at risk.
So I'm afraid you are wrong.
On a FB group I am on with parents who have t1 we worked out roughly one in ten of the children also have t1.

 

[ExtremelyW0rried]

There are families where it runs through three or four generations. It cannot be just bad luck.

 

[Sue192]

It seems to me that your logic, @ExtremelyW0rried, applied to the population in general, would result in not very many people being here. I for one: my father had pyloric stenosis and was one of the first to survive the operation (this was nearly 90 years ago) - his mother was told that he shouldn't have children (it was thought to be hereditary at one point) and she shouldn't have any more. She did - they were all fine. He did - I'm fine. Taken to extreme, then surely those with family histories of heart disease, cancers and many other serious disorders or illnesses shouldn't have children. We are then entering the realm of Sir Francis Galton.... I am saddened by the fact that you feel you have nothing in common with your children already, even though they are so very young. I am saddened by the fact that you wish that you didn't have them (oh, how I would love to have had children). As others have said, please try and seek help for your fears and depression, but please also realise that your views are your own: although you are of course entitled to have them, I can imagine some T1s being seriously upset by those views.

 

[lucylocket61]

There are families where it runs through three or four generations. It cannot be just bad luck.

I see your main problem as the way you view diabetes and diabetics.

Regardless of genetics or not, you have an extremely negative view of diabetics. I think you have crossed the line into eugenics. Have you thought about how your children will view your attitude, if they are not aware (subliminally at least) already?

 

[Mbaker]

I am not sure about the rest of your family, but you really sound like you could do with formal respite, you must be extremely tired. Nothing wrong in asking for some help, just so you gather your thoughts and build up your strength. If this resonates start with your Doctor.

 

[lucylocket61]

I do wonder, given the turn this thread has taken, of wishing diabetics to not produce children, and to be better off dead than diabetic, if such hateful descriptors are permitted on this forum?

If someone was talking about people with downs syndrome, or cystic fibrosis, or cleft palates, would such views be in keeping with the posting rules of this forum?

@DCUKMod , any thoughts on this?

 

[lucylocket61]

I have now backtracked and realise that this advice to get medical health, or various sorts, has been being suggested for 5 months now. Although I am concerned for the OP and her children, I think the help needed is far out of my capabilities and the negative view of diabetics and others with serious illness is affecting my mental health. So I wish them well, and will bow out of this discussion.

My mother was disabled at the age of 5 (polio) and this is just bringing back the sort of stuff she was told when she had children, and the horrible comments directed at us children too, as if we were substandard and harbouring mutant children if we also had families of our own.

I thought such attitudes had moved on : (

 

[KK123]

These type of posts just suck the joy out of life, maybe extremelyworried should speak solely with nokindofsusie and be done with it. I get that people can be seriously depressed but I don't think it's right to constantly drag others down especially on what is mainly a positive forum.

 

[ExtremelyW0rried]

It isn't my intention to upset others.

I suppose I wish the risks had been made more clear to me - of it being present in two generations already and how that raises the risk further - so I could have made my own decision. Other people may have different views I realise.

Personally I feel life is tough enough for children without adding t1 to the mix and that is why I feel so responsible for giving them this c****y disease. Furthermore the NHS won't exist in another ten years or so which also worries me as they are going to have to finance all the medication etc that they will need. Another burden, although I know those in the USA and other countries already carry this burden.

I cannot change things, I cannot undo them, they didn't ask to be here so we have to try and make the best of it for their sake I suppose.

Edited by moderator for language.

 

[ExtremelyW0rried]

I am not sure about the rest of your family, but you really sound like you could do with formal respite, you must be extremely tired. Nothing wrong in asking for some help, just so you gather your thoughts and build up your strength. If this resonates start with your Doctor.

Yes, I've been to the dr about eight times in the last few months.
18 month wait at least for any help. Unless i want to take anti depressants, which I don't.
Sadly it isn't as simple as go to the dr and they will help. They have no money to help.

 

[Diakat]

It isn't my intention to upset others.

I suppose I wish the risks had been made more clear to me - of it being present in two generations already and how that raises the risk further - so I could have made my own decision. Other people may have different views I realise.

Personally I feel life is tough enough for children without adding t1 to the mix and that is why I feel so responsible for giving them this ****** disease. Furthermore the NHS won't exist in another ten years or so which also worries me as they are going to have to finance all the medication etc that they will need. Another burden, although I know those in the USA and other countries already carry this burden.

I cannot change things, I cannot undo them, they didn't ask to be here so we have to try and make the best of it for their sake I suppose.

But you haven't given it to them...

 

[ExtremelyW0rried]

But you haven't given it to them...

It is just a matter of time.

 

[Ambersilva]

It is just a matter of time.

I was diagnosed T1 at the age of 63. So it took a long time. BTW, there were no other Diabetics T1 or T2 in any of the three generations before me.

Why are you a member of a FB group of parents with T1 children when your children do not have diabetes?

 

[DCUKMod]

@lucylocket61 - I have not commented on this thread, because I have nothing to add which isn't a variation on a theme to some views already put forward.

I think it is very regrettable the @ExtremelyW0rried feels as she does, and her views don't align with my own, but it isn't my place on this forum to tell people what to think.

As a member, I am here to share, in both directions, views and knowledge relating to diabetes and all that goes living with it, and as a Mod and member of the site Admin Team, my role is to aid the smooth running of the site and where necessary adopt a safeguarding role, by ensuring our Community Ethos and Forum Rules are upheld.

I sincerely hope ExtremelyW0rried finds a way to move to a more positive mindset and to embrace her condition and her children. Life is for embracing and living to the full.