Huntingdon's disease

Kamiso, no I wasn't being combative at all, I just wondered where we draw the line. I have a genetic condition in my family but I wasn't a carrier, had I have been I may have made different choices wrt having a family (although options are available now which were not 20 years ago)

Isn't it Huntington's disease? If that the case doesn't the error suggest little knowledge of the disease? I am aware of someone who had it but was not affected until he was in his fifties. He was pretty much incapacitated within a few years of its onset. Who can judge the value of the good, happy, useful life, contributing to society he had up to then, against the 24 hour care he now needs? I wouldn't know where to start.

PippaZ, I think it is Huntingtons. Unless there's another disease out there that I don't know about.

I think the odds are too great to take the risk. This disease will continue to be transmitted until gene therapy helps or carriers do not perpetuate it. I have nursed people with this cruel disease so I know it's effects.
JaneJudge I would feel this way about any genetic condition if I knew I was a carrier. Life is very unfair.

This woman needs love and support through her decision to have a baby.

Persrsonally, knowing much about this disease I wouldn’t have a child, but let’s not be critical or judgmental unless you’re walking in her shoes you can never tell.

It’s a dreadful disease which goes on for ever through a families genealogy. There’s also a high teenage suicide rate. Dreadful

I do not think that saying that you would not wish your child to suffer is in any way negating the value of this lady's life or anyone else with disabilities or illnesses.

As well as the physical effects, this disease can be devastating mentally - I would not want my child to witness this.

I do not think the woman is selfish. The 'new' gene breakthrough with the vaccine can now be looked at how this and other diseases can be eliminated. This is a marvellous breakthrough and this science will change our thinking of this and other diseases.

To be fair to the couple though, it looks like they did seek medical help to eradicate it from their gene line. In her country (NI) she was told she too overweight and obviously an ethical decision was made in Denmark (or was it Belgium, I've been out since I read the article) because she was already showing symptoms herself.

A family friend had this. He lived well into his eighties and his symptoms were slight until very late in his life. Although some of his behaviour might have been the result of his illness it really wasn't so extreme it stood out. I know he was very lucky. This child obviously has two loving parents one of whom may at some point become ill, the degree or severity of her illness it is impossible to predict. This is more than a lot of children have. I wish them all a happy future.

It's a terrible situation with hard decisions to be made. I can only speak for myself - if I had an illness which was hereditary I wouldn't want to take the chance that children could suffer. Ordinary life can be difficult enough without adding a dreadful disease to the mix.

How can people know what they would do in someone else's situation?

So much judgement here.
Some of us love people like this and I assure you their lives ARE meaningful - and they add to OUR lives, and society.

A good case for IVF I think - only an embryo free of the disease would have been implanted.

I thought the same, Luckygirl, but then would it be fair to bring a child into the world when that child will have all the distress, perhaps at a young age, of seeing his or her mother succumb to the disease?

love0c

I do not think the woman is selfish. The 'new' gene breakthrough with the vaccine can now be looked at how this and other diseases can be eliminated. This is a marvellous breakthrough and this science will change our thinking of this and other diseases.

We can only hope.

NotSpaghetti

How can people know what they would do in someone else's situation?

So much judgement here.
Some of us love people like this and I assure you their lives ARE meaningful - and they add to OUR lives, and society.

People don't know what they would do and too right people with illnesses and disabilities add to society and are loved

JaneJudge

NotSpaghetti

How can people know what they would do in someone else's situation?

So much judgement here.
Some of us love people like this and I assure you their lives ARE meaningful - and they add to OUR lives, and society.

People don't know what they would do and too right people with illnesses and disabilities add to society and are loved

But that is judgemental too:

Some of us love people like this and I assure you their lives ARE meaningful

Others may love "people like this" but might make the judgement that knowingly bringing a child into the world who may suffer is selfish.

People don't know what they would do
None of us do if faced with those circumstances.

I suppose any view or comment is a bit judgemental. It is such a complex issue, I can't see how it couldn't be.It is the whole point of medical ethics really, basing decisions in a non religious, non biased, unemotional way.

I think there is a difference between pre pregnancy and prenatal and people who have been born too. But I am not religious and I respect other people don't have the same feelings as me about things

I also want to add, my initial thought was I wouldn't want to bring a child into the world faced with such a diagnosis, if that child hadn't been conceived but then I looked at the couple in the link Suedonim posted and I thought how happy they looked and was it any of my business

A judgement need not be judgemental. It can simply be the expression of an opinion.

As someone who spent their working life with people who had disabilities I found your comment very patronising NotSpaghetti
"People like this" are just people surely, not to be loved or otherwise because of their illness/disability.

I know a family who decided never to have children because this ran in the family . The husband's sister and father died of it , it is a horrible disease . I knew the poor woman who lost her husband and then daughter after years od infirmity.

If I carried the gene of an heredity condition I definitely would not have children. So cruel to condemn someone to a an incurable disease.

I must admit I was rather shocked when I read about her. My oldest friend's husband has just died after 15 years incapacitated with Huntingtons. My husband died after 10 years of cancer and the Huntington's was far worse. The deterioration of mind and body is terrible, I can't imagine risking passing it on. His mother had died of it so it had always been hanging over him.

sodapop

As someone who spent their working life with people who had disabilities I found your comment very patronising NotSpaghetti
"People like this" are just people surely, not to be loved or otherwise because of their illness/disability.

Yes, I think this was a poor phrase typed in despair. "People like this" was how I felt others were seeing disabilities.
Apologies.

Huntington's. HD. Used to be called Huntington's Chorea when I was young.

At 6 yrs old I was my Mum's carer and at 16 I would have been an orphan if I hadn't been adopted. As it turned out my Mum was symptomatic before my sister was born but I didn't realise it at the time. Eventually Mum's condition became too much for me to manage even with support. When she was hospitalised I got my childhood back but lost my Mum, even though we went to visit her, I'd lost her.

My family have early onset Huntington's. Symptomatic in early to mid 20's with life expectancy was 42 yrs old. Ours isn't the earliest onset or the earliest age of mortality. Although later onset is considered more the "norm".

I'm 68 my sister is 64. My mother died just before her 41st birthday. Her father died age 42 and 2 of his siblings died of HD in one in their late 30's and the other in their early 40's. They were a family of 10 children so 5 should have had HD not 3.

My mother was one of 5 siblings and the only one to get HD. Two are still going strong, age 98 and 87. Mum's eldest sibling died age 85 after a stroke and the 3rd eldest had an aneurysm, also in their 80's so the 50% didn't always work out either

I don't have it, my sister doesn't have it and our kids don't have it. Sis and I are too old to have it and the youngest of our kids is also too old to have it.

I was past the age of mortality before the test was available but my sister had one of the early test - negative thank goodness. In reality she was also past the age of being symptomatic but was tested as part of the study.

So is it right to have a child if you know you have HD who knows?

The couple are brave and from reading the article they are as prepared as anyone can be and there is no shortage of Love but bottom line it is their decision and I wish them well.

I'm glad there wasn't all the knowledge and options available when I was young. I didn't have the enormous dilemma I'd have now regarding the to have children or not debate.

I have to say there wasn't much information available and things weren't discussed in our family or in the media so I never had the real soul searching that HD families of today have.

In fact discussion was discouraged in our family as it upset my gran, who lived with us. and who had lost a husband and a daughter to HD.

By the time I had my first I was it was reasonably clear to my family and our GP that I wasn't symptomatic so there were no objections or questions about the rights or wrongs of having children. Our GP diagnosed my Mum and stayed in touch with her even after she was hospitalised so he had as good idea of what was what as anyone I had access to at that time.

Looking back I gambled. With my second more was known and I was symptom free so much safer.

I do vividly remember in my late 20's early 30's having a persistent worry about getting to 42 before I could really feel safe. Because as time went on, studies came out and testing was on the horizon I realised I'd taken our GP's encouraging words as gospel that all would be well. I began to realise that I'd gone into parenthood with blind faith or outright stupidity and nowhere near the diligence I should have applied.

Thankfully all is well, my children haven't had to watch my deterioration or care for me the way I had to for my mum.

But she was and always will be my Mum - more - so much more than Huntington's and I'm glad for every day I had with her.

My sister and I are so very lucky. HD is dead in our family.

We won the gene lottery. The Savage gene is no more in our family.

Other families are not so lucky. Those who have to face the prospect of getting HD or passing HD on are really the only people who will have to make the difficult choice irrespective of our opinions.

I have a saying about opinions but here isn't the place so I'll leave that for now.

I wish anyone facing difficult decisions, support and understanding, and the very best of Luck. Because we all need some Luck in our lives.

Powerful words allsortsofbags and lots to think about.
Thank you so much for sharing your family's story.