My partner and I are thinking about IVF and PGD, however we're struggling with weighing up the very obvious benefit, with the risks associated with IVF.
My Partner, his father and sister all have CMT, however they all seem to have fairly mild symptoms (I think). My partner had surgery on his foot when he was 16, but other than that they seem to have avoided most of the pain and other really debilitating symptoms associated with it. Could that mean our children would, were they to inherit it, be likely to have it mildly as well, or would it not be related? Does anyone know?
We're struggling to make the decision because of the fact that IVF carries risk for my own health (although I could happily risk that), but also has twice the risk of premature birth, which, depending on gestation, can have extremely serious consequences.
Do those of you who have lived with the condition and its consequences longer than myself think that preventing the chance of CMT is worth the lower risk of having a baby with severe cerebal palsy, who could have head to toe problems resulting from being born to soon? The consequences of that seem much more severe, although the risk is smaller.
Does anyone have any tips on making a decision about this? Or has anyone gone through this?
I Have CMT worse than my father, and I was recently told by a doctor that if I have children and they inherit CMT from me they will have it worse than I do and then their children would have it worse than them. I have not looked in to it more than that I sort of just took his for it.
I am currently looking in took and learning more about IVF myself (Just to learn Im 25 and do not have a girlfriend ha) I live in California and have found what seems to be the best group of doctors here because they have been doing IVF the longest. If you are interested i could pass their info on to you I am sure they would be happy to answer any questions you have a lot better than i could.
When my daughter was diagnosed with CMT I did quite a lot of research about it the disease, including whether it was likely to worsen from generation to generation. There's no scientific conclusion on that. Anecdotally, some sons or daughters have it worse than their parents, others don't. The scientists I have spoken with say there's no theory or explanation for symptoms to become more severe in succeeding generations.
That's not what I wanted to her, that it gets worse generation to generation, however if its true thats probably good to know. My partner has it worse than his father, who has it worse than his father, so I do believe that.
I live in Australia, so California Dr's are probably not that much use to me, but thanks.
Thanks for replying.
mallard said:
I Have CMT worse than my father, and I was recently told by a doctor that if I have children and they inherit CMT from me they will have it worse than I do and then their children would have it worse than them. I have not looked in to it more than that I sort of just took his for it.
I am currently looking in took and learning more about IVF myself (Just to learn Im 25 and do not have a girlfriend ha) I live in California and have found what seems to be the best group of doctors here because they have been doing IVF the longest. If you are interested i could pass their info on to you I am sure they would be happy to answer any questions you have a lot better than i could.
Thanks for your reply, its good to know that its not a given thing and that nothing has been proven, although it still seems to be likely.
ralber said:
When my daughter was diagnosed with CMT I did quite a lot of research about it the disease, including whether it was likely to worsen from generation to generation. There's no scientific conclusion on that. Anecdotally, some sons or daughters have it worse than their parents, others don't. The scientists I have spoken with say there's no theory or explanation for symptoms to become more severe in succeeding generations.
Thanks for your reply, its good to know that its not a given thing and that nothing has been proven, although it still seems to be likely.
ralber said:
When my daughter was diagnosed with CMT I did quite a lot of research about it the disease, including whether it was likely to worsen from generation to generation. There's no scientific conclusion on that. Anecdotally, some sons or daughters have it worse than their parents, others don't. The scientists I have spoken with say there's no theory or explanation for symptoms to become more severe in succeeding generations.
I am not really qualified to give you advice on this matter as I can only speak as a sufferer. Any child may well be affected a lot worse than your husband or any of his family, it's all a matter of luck. But even if you child was only mildly affected his/her condition will almost certainly deteriate in time.
Please give serious consideration to this matter.x