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Huntingdon's disease

(60 Posts)
Luckygirl Mon 14-Jun-21 22:57:54

So hard. I just thought that this might be setting in train many many people who might have to go through this very distressing disease; their child will have children and so on, until this one decision has impinged on the lives of many.

I have to say that I would not remotely have contemplated bringing a child into the world to suffer so, both by watching what happens to his/her mother and then knowing it will happen to him/her, and then their actual suffering.

A good case for IVF I think - only an embryo free of the disease would have been implanted. I know, I know....eugenics at work. But it is done all the time now.

Huntingdons is utterly grim - not just the physical problems but the mental. Having recently lost my OH to a degenerative disease that has both physical and mental effects I know only too well what lies ahead. I would wish it on no-one, least of all a loved child.

Shelflife Mon 14-Jun-21 22:57:41

Thank goodness I was not in this womans situation. If I had her condition I would have decided not to have children. Can't speak for anyone else though - it is a very personal decision. It is not just about a womans freedom of choice it is about the huge risk she would be taking and the devastating illness she may be inflicting on her child. However I recognize it is her decision to make.

Doodledog Mon 14-Jun-21 22:52:09

What a difficult decision to make - the poor woman.

We don't know the circumstances, though - the woman may have religious or ethical reasons for not using contraception or termination of pregnancy. Also, research into Huntingtons is ongoing, and there may well be a cure before the unborn child is affected - it usually strikes in middle age, I think.

I don't think that anyone except the woman and her husband/partner can comment, really, but I wish them and the baby well.

Chewbacca Mon 14-Jun-21 22:43:03

I know of a family in which their is a filial history of a degenerative wasting disease, with resulting blindness and very premature death. They knew this when they had their first child, hoping that he/she would not be afflicted. Sadly he is and now, at aged 9, he is completely blind, immobile and is not expected to live beyond 10 years of age. They've gone on to have 3 more children, all of whom have the same terrible disease and are all in various stages of blindness and immobility. The community has held many fund raising events so that they can have as much practical support as is possible and, whilst I have also contributed to that, I have wondered why, having seen the devastating effects of this illness, they have risked the lives and well being of 4 very young children. But I'm not in their shoes and so I don't know the answer.

JaneJudge Mon 14-Jun-21 22:26:23

Do you feel the same about other genetic conditions or just Huntingdons?

Kamiso Mon 14-Jun-21 22:21:49

To some extent it depends on what support she has but the child will have to witness her mother’s decline, especially once he/she realises they may go through the same experience.

Sad situation all round.

BigBertha1 Mon 14-Jun-21 22:18:40

How very unkind of you.

sodapop Mon 14-Jun-21 22:09:58

If the woman chooses to make this public then judgements will be made

BigBertha1 Mon 14-Jun-21 22:07:11

It's not up to us to make judgement s on other people's lives.

sodapop Mon 14-Jun-21 22:05:56

What do others think about the woman who has Huntingdon's and is now pregnant. Her child has a fifty fifty chance of inheriting this awful disease.
The woman was aware of her condition when she became pregnant and is already showing some symptoms.
I think it was a very selfish decision.