To have children and pass down a genetic disorder?

I have a genetic condition - a dominant gene, so DC would have 50/50 chance of inheriting it from me. Some people with the disorder can be very badly effected, some people barely affected at all. it doesn't hugely impact quality of life for most sufferers - very seldom do people have chronic pain etc.

For ages I was sure that I wouldn't have children because of the risk of passing it on. But then someone told me "better to have crap genes than no genes at all" - i.e. better a shortened life than no life at all; after all everyone dies sometime.

What a nasty thing for a friend to say.

I guess as someone who has inherited the gene/disorder herself, you are well placed to make the decision re children.

I hate this idea that "perfect" bodies and perfect lives are somehow worth more or are more valued than flawed bodies and flawed lives.

What a horrible thing for your friend to say! You should not feel guilty for having children!!

My situation is different - my dd was extremely premature, and has had a rough time, we spend a lot of time in hospitals/Drs/ waiting in for nurses. She needs a gastrostomy as a result of illnesses linked to her prematurity. I decided early on that I would never have another child. I don't think I could risk going through this again, and putting another baby through what my dd has been through. But that is my own personal choice and one that I get judged for too.

Yanbu

There are certain genetic disorders i'd have pre-implantation screening for but that's a very personal decision and i wouldn't judge anyone for making a different decision

I have genetic Hypermobility Syndrome from one side of my family, and a genetically 'influenced' form of epilepsy (in other words, they know it is genetic given the pattern of incidence in females in our family for at least 5 generations, but haven't yet found the gene/s responsible).

I never for a moment considered NOT having children. Though I may have done had the epilepsy been found to have a genetic link BEFORE I had my DD. but only considered, I probably would still have gone ahead.

The Hypermobility affects 50% of each generation, roughly, so the odds were that it was just as likely for them not to have it IYSWIM. 3/4 of my DC's DO have it, but only one is severely affected.

The epilepsy wasn't investigated until my own diagnosis, AFTER 3 of my DC's were born. OK I then made the choice to continue with a further (accidental but much loved) pregnancy, but thankfully it was a boy. (No males affected by it)

DD HAS got epilepsy, but it is a lot milder than my own. Hopefully by the time she is 17, she will still have been seizure free for long enough to drive. Which is unusual in my family.

Kills my younger sister also got a DVT from a short plane journey, luckily she was aware of symptoms to look out for and called me straight away. I took her to A&E who took a lot of pursuaving and strong words to check it out properly

The 'problem' I had was that it took four different doctors four days to finally figure out it was a DVT (!) then I got a second clot within a month whilst still on warfarin so now I'm on it or life, my leg is a mess with varicose veins ie I can't wear skirts / shorts (I'm 35) which is sometimes a pain lol! Totally the doctors fault though, if they'd caught it properly the first time (which incidently he admitted to knowing afterwards) then my leg wouldn't be half as bad!

I dont think your friend is much of a friend op.
My dh has a genetic disorder that has a 50 per cent chance of being passed down to our children. We thought long and hard about this, but figured that although the genetic disorder is a reasonably serious one, there is still no reason why our children wouldn't have happy and fulfilled lives, even if they did inherit it. On that basis we went ahead
If a friend said that to me I don't think I would want them as a friend anymore.

My husband has Leiden factor V he is one of 4 brothers and 2 of them have inherited it.
My husband has had no problems so far (he is now 46) the other brother with the condition has had 2 clots and he is now 54. My father in law from whom they inherited the condition died a few years ago aged 81.

I have 3 sons who we haven't had checked yet - we didn't even know about the condition until relatively recently and none of the family are taking warfarin yet, although my father in law did.

We will have our boys screened and take the necessary precautions regarding long flights etc because we now know what we are dealing with.

Your friend is being very judgmental.

It has never occurred to us that we shouldn't have had our boys. we know what the risks are and we know what they should do to keep well.

Well i have it, my mum, nan and 3 out of my mums' 4 sisters do. I had 2 children when we found out, went on to have another and now considering a 4th, I can honestly say that we have not considered it a factor for not having children!
We have not had any major problems with it, and obviously now we know we take extra pre cautions. (also explains why i DVT with the pill at 16)
Will get my dc tested at 13, just so we know/ can advise how to help.

Your friend was out of order.
Please keep strong.

op i dont think your friend is really your friend.

OP do you think you will be saying anything about her comments next time you see her?

<a class="break-all" href="http://www.google.co.uk/imgres?um=1&hl=en&safe=off&client=firefox-a&sa=N&rls=org.mozilla:en-GB:official&biw=1366&bih=638&tbm=isch&tbnid=21Iy49RV9DPI1M:&imgrefurl=www.retinaaustraliansw.com.au/rp.htm&docid=87bwDOZjSCys9M&imgurl=www.retinaaustraliansw.com.au/images/AutosomalRecessiveInheritance.gif&w=565&h=448&ei=I7AqUNy4LIew0QXFpoH4CA&zoom=1&iact=hc&vpx=348&vpy=228&dur=1314&hovh=200&hovw=252&tx=115&ty=106&sig=116376348858149390140&page=2&tbnh=131&tbnw=168&start=21&ndsp=26&ved=1t:429,r:21,s:21,i:207" rel="nofollow" target="_blank">this diagram may help explain dominant recessive diseases.

Words fail me.

YANBU, when you consider the implications of her thoughts - she is basically saying that she doesn't think your parents should have had you.

At best she is thoughtless. I hope that's what the problem is.

I have hypermobility sydrome, its genetic and I'm 38 weeks pg. It never even occured to me not to have children to be honest. The condition causes me pain and discomfort but unless my daughter gets the more severe condition which is linked there is no reason for her not to have a normal life. I know its not quite the same as your condition but I will still most likely pass this down looking at family history.

Way I see it is- you could have a perfectly normal body and give birth to a child with conditions, genes are a complicated thing, if watered down your child may or may not inherit what is wrong with you. Your child could be born healthy and then get an illness which leaves them with health problems.

I think that was a really cruel thing for your friend to say and I wouldn't give it any more brain space than it deserves.

We haven't had anyone born into the family that hasn't had it for over 70 years

Well that sounds unlucky, but as far as I know there is no way that a single gene (or even a group of genes) could exist in a pattern that means that your children will definitely inherit the issue, if you are having children with a partner who is not a part of that family.

If it's a single dominant gene then it is as if you have rolled 10 heads in a row, but that doesn't mean you are more likely to roll a heads (has it) than a tail (doesn't have it) for every individual child that you have.

If it's a group of genes that interact it's more complicated, but still not possible to be 100%.

I hope your children do have the milder form - when will you know? Or will you never really know?

oh, i think you answered my question in your post above honeytree :)

Someone gave me dodgy genes, I didn't know how had a genetic condition and had two kids who both inherited it.

Is she a big donor to jeans for genes Charity?

As others have said, at least you know about one d them. I sympathise. DH is a haemophiliac so we went through huge discussions on this before ttc as daughters would be carriers and pass it into their children in any case, and in the event that I also unknowingly carried the gene, it would affect any DCs.

DH was very much of the view that chronic haemophilia A with 0% factor 8 was liveable with, it was arthritis and poor screening of blood products for hepC which actually made things difficult. So we went ahead. We have a lovely DD who knows her blood is a little bit funny and special like daddy's so head dives off climbing frames are not a good idea,but otherwise both DCs are fine.

Also, this would imply that both your parents carry the mutation

honeytea - im confused as to how you got a "double copy" of the gene. If it is a dominant condition, you only need one defective gene to cause the condition, however, dominant x dominant usually = non viable :(

I think your 'friend' should be ashamed of herself.

Honeytea, there had been lots of mysterious deths in my family. People dying very young sad with no actual cause of death. When my cousin died the morning after his 18th birthday they conducted an autopsy and found he had a blood clot to the brain and run tests ect. It's such a common thing now in my family for one of us to be in hospital with a blood clot and doctors are really stumped as to why it is that serious.

I had no idea it could be that serious, I am so sorry to hear about the loss of your cousin that is so so sad :( I didn't mean to belittle it, I just didn't realise it could be so serious.

I wonder if they told you and the kids had the gene from both parents, I think that makes it more dangerous, about 5% of white people have the factor v gene, so it isn't that rare, but the chance of your DP also having it and your kids getting a double dose is low.

Also there are so many blood clotting issues that are not understood yet, The tests they did on me were so intense, about 15 different blood clotting disorder tests. Maybe your cousin was unfortunate and had factor 5 doubled or with another disorder.

The chances of your DC being effected to the same degree is unlikely.