To have children and pass down a genetic disorder?

I have a condition which my daughter has a fifty percent chance of inheriting. When I became pregnant I did not really understand the implications of the disease. and I remained healthy until my mid fifties - since then have experienced serious health issues. I have agonised in the last few years about the possibility that my daughter might have inherited the condition- she is healthy and has not been tested for it. I pray that she is unaffected but I have made sure that she is informed and that she knows what her options are in the future if she is affected, particularly with regards to having children herself. The options include pre implantation genetic testing for the condition and subsequent IVF. But whatever she does, it will be her decision.

I know what l meant to ask you clever lot aswell. There is a lhigh incidence of unexplained deafness in the family from birth, but interestingly not the children who have full blown CF. Or in one instance , one parent a carrier one not , but their child was born deaf.

Have we all just got dodgy genes and it's just coincidence - another genetic fault , or could it be the CF gene manifesting itself in other ways iyswim.

Yes Bumperalla and others hacve a point. My DGD is as l post dancing to Just Dance and having an absolute ball - she is 12. The life expectancy of CF has gone up into the thirties now l believe and many are living into their 50s apparently, you wouldnt know there was anything wrong with her as a casual observer. She definitely has a near 'normal' good quality of life, apart from having to take her Creons (sp?) whenever she eats anything containing fat and having to have physio which even that is now a session on her trampoline which most 'normal' kids enjoy doing anyway. But it is still a horrible condition and a bit of a black cloud hanging over the family (her cousin died at 20 from it about 10 years ago) so we cant play it down too much but l agree there are many more what you would call seriously debilitating conditions out there.

sorry, ** 50% chance of BREAST CANCER if you do get it.

I studied genetics and bumperella is right.

It is 50/50 in most cases if one parent has the gene. Unless it is sex linked of course. Like Huntingtons.

Plus, factor V is an either or gene, things like BRACA mean you have a 50% chance of getting the gene and then a 50% chance if you do get it.

Gernally behavioural genes have far less statistical weight (seeing s you asked about SN) though obviously genes that culd lead to physical disabilit are better understood.

I haven't read the whole thread I confess, but we have six children (three are my step children) DH has Antithrombin Deficiency another serious blood clotting condition. He hadn't been diagnosed when he had the children.
Five out of the six of them have inherited it. It has nearly killed my husband and his sister on a number of occasions. They both have countless blood clots in their lungs and legs. Their brother died of a blood clot in the lungs and heart.
My Stepson has had loads in his lungs, one of my step daughters had a massive clot that damn near reached her heart. Now we all know the situation, and they are all under the same consultant in a specialist centre for this condition, it is all about managing the condition, and the outcomes are so much brighter.
I do worry about them, but education about the condition is the key. They can make informed choices about how to live their lives.

Our three also have dyslexia/dysgraphia and dyspraxia. One has ADHD. All inherited from me and my family and causing so many problems that we had to remove them from school and home educate them.

One of them was yesterday diagnosed with Joint Hypermobility Syndrome, which causes her extreme pain and many difficulties. Again, it looks like she has inherited it from me and my family

The off spring who doesn't have the blood clotting disorder, was born with a congenital abnormality called Gastroschesis. Not inherited, but could possibly be caused by something I did in pregnancy. I have no idea what, but he is the one I feel guilty about.
The rest I am determined to aid them in living their lives to their full potential.

None of them have chosen to not have children because of any of the problems-which says it all really doesn't it?

bumperalla Are you a geneticist? An expert in this type of thing? Do you have DCs with SN?

I would love to know that before I answer.

There's really no such thing as a HIGH risk of SERIOUS genetic condition! "High risk" would be, what, 50/50? And that would mean a dominant gene, which would mean that the parent would have it. Is it really a SERIOUS condition if a parent could have a child and live long enough to see child through to adulthood without child having to be a carer? Bearing in mind that a few generations ago medicine wouldn't be able to keep someone alive and healthy long enough.

People just see "genetic condition" and assume that that means the child will have a life of painand suffering followed by an early death, which is nonesense.

IMO if you ahve a child knowing that you are unlikely to survive long enough to see it leave school, and that you are likely to be in need of care long before that stage, then that is a far more significant decision than any potential genetic condition.

I never post, but now I had to. That is just ridiculous. I have the same thing, so do my sisters, and my twin girls. Never had any problems. My grandfather, who just died at 98 also had it. Definitely didn't affect his life negatively. If I remember correct, about 15 percent of people from my home country (one of the Scandinavian countries) is thought to have the same mutation. Might be dated information, but the point is, it's extremely common.

People are so ignorant, can't believe your friend.

Your friend is a nasty, insensitive arse.

Tell her to fuck off;; then not to breed as her kids might get the complete bitch gene.

Sorry OP but I do think people who know they have a high risk of passing a serious genetic problem onto their offspring are being rather selfish having children. I know it's all a risk and even those who think they are perfect genetically (as if!) could unknowing have something nasty to pass on, but if someone knows they are high risk I think it's kinder not to have children and to adopt or foster instead if parenting is important to them. Personally I wouldn't be able to look at my ill children and not feel that I was the cause of their pain and suffering if I was in that situation. What I find odd is that anyone who breeds animals from unhealthy stock is seen as so irresponsible yet us humans do it to ourselves all the time.

YANBU, OP.

I have Factor V Leiden too, it doesn't actually affect me at all and I wouldn't even know I have it if I hadn't had the blood test at 16.

It doesn't affect day-to-day life, it doesn't leave you in pain and it's only rarely life- threatening.

Don't beat yourself up.

Ginny.Children who have Down syndrome are far more likely to develop leukaemia than children who do not have Down's syndrome. They're between ten and twenty times more likely to develop leukaemia. They may possibly have a lower risk of some cancers,,but that's certainly not true of childhood leukaemia.

Thanks for the link Thumbwitch :)

so very few people who get a positive result go on to have the child

But logically the people who would go on to have a child with DS most likely wouldn't have any tests, and certainly wouldn't have any tests that carried a risk of miscarriage. The sample of "people who have the test" is massively skewed towards "people who would abort".

honeytree - 3rd nipple. Brilliant!

Your friend is very insensitive. Blank out ignorant people that make hard and fast judgements before walking a mile in your shoes.
My DB had 4 children before they realised that cerebral palsy from his DW side had been passed on to three of them. It was . No-one judged, and it was no-one's place to (although we were a bit when she was talking about having another...).
When your kids have kids the technology (and politics) may have moved along enough that embryo selection will be possible and it could potentially be eradicated. Whether that is morally 'right' or not is irrelevant, it will be down to choice. Just as it was YOUR choice.

just quickly ariane5 please dont be too upset by what your DGM said. They were a different generation completely and werent big on subtlety and l will never forget my DM berating her friend in the street on announcing her 6th pregnancy at the age of 42 to her. 'what on earth do you want another one for at your age, you must be mad' . Though she did congratulate her then. But l think they usually mean well and are thinking only (albeit misguided sometimes) of your best interests and l am sure she thought the world of you and your children.

Right must stop procrastinating now and clean my minging house !

Yep! You should see some of the non-clear versions...

sorry posted too soon i'm not good with science or technology apparently

but seriously now, meant to say thank you, that is very interesting and quite hopeful that they arent far off. Just hope in time for my sweetie and others.

Gotta go now RL beckons as aforementioned sweetie and her sister and my son coming to stay for a few days and house is a swamp .

Yes Ginnybag that's a bit like my thoughts when reading about the Aids virus could possibly hold the secret to cure CF. Out of one human tragedy sometimes comes the answer to another and so forth so we shouldnt take all the control away from Mother Nature perhaps she still does know a thing or two even in these scientific times.

Thumbwitch

and that's the 'clear language' version .

OP what your 'friend' said was very unkind.

It was not selfish of you to have children knowing they could inherit this condition.

my dcs all have a genetic condition which causes them a lot of pain and discomfort, only once did I get a comment similar to what your friend said to you and that was from my grandmother when I told her I was expecting dc4 she couldnt believe I would be bringing 'another handicapped child into the world'

Ignore what your friend said and concentrate on your lovely dcs

Please don't, anyone, think I am assigning anyone with any condition a 'value' based on what they may or may not be able to contribute to the human gene pool, re the Down's comments

I'm not, and I don't presume that any parents' decision is anything to do with me! It was just a valid, modern example of the dangers of removing what might be seen as 'the bad' and also removing what could be seen as 'the good', without knowing it.

honeytea - very interesting points well made, and I agree. Designing out genetic variability in the human race is designing out evolution.

There are concerns re: Down's screening from some geneticists at the moment, because so very few people who get a positive result go on to have the child. Make's sense, you hear - except the people with Down's almost never get any form of Cancer. They seem to be genetically proof to it.

Get rid of all Down's kids, we could also kill the evolutionary fix for Cancer. Not good.

There's also talk that hereditary short shortsightedness might be a trend to change the race away from hunter-gatherer's to the types of closer-up work more needed now. Who knows.

God knows what else is out there like that. I'm all for science - I am a scientist by training - but sometimes scientists shouldn't make decisions.

And bitchy friends never should!

FYI, sudaname - this recent article (ok, it's only the abstract but still, it's written in unusually clear language!) suggests that they're considering looking at the human papilloma virus (HPV, some strains of which are associated with cervical cancer but many are not) and norwalk virus, aka norovirus (that lovely gastro virus) as vectors because they can penetrate the unusually thick mucous secretions better than the other virus vectors that have been tried so far. Of course they would use modified versions of these 2 viruses as well, not the originals. :)