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Genealogy, children, PGD Discuss family and preimplantation genetic diagnosis issues

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Old 28-08-16, 02:21 PM   #11
lunel78
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Default Re: Baby decisions

i.wonder - very well put - thank you for providing a more encouraging view.
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Old 28-08-16, 10:26 PM   #12
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Default Re: Baby decisions

Quote:
Originally Posted by i.wonder View Post
Hey Inca,

I'm sorry that your going through such a tough time, its so hard isn't it?!?!? I too am currently being tested for hd as I am currently at risk and would love to have a family. I am awaiting my test results as we speak but have known about the disease being in the family for nearly 10 years now, so have had alot of time to reach acceptance and to mull things over. I want to go down the route of pgd but I thought id offer you the other coin toss, so to speak, as no one else has.

I too, like so many others, was adamant that I would not have children naturally if I had the gene and go down the pgd route and if that failed I would not have children, as surely that would make me an awful person...hmmm. People are very quick to tell you it would be irresponsible to do so but not many are put in the same impossible decision that you have had to make - many have had the joy of watching their children grow before discovering that the gene even existed in their family. I'm afraid that the only person that can come to peace with the decision is you and your partner.

If my mum had known about the illness and the science was available (pgd) then I, quite frankly, probably wouldnt be here typing this message to you. Those who say they would not risk the chance, are effectively saying that my life would have been filled with misery and illness - which is the complete opposite to the 30 years of wonder I have had so far. I have travelled the world, seen those less fortunate than myself, found the love of my life and have had a life filled with laughter and love. Yes, my mum has this awful illness and I face the possibility myself of inheriting it, but I have reached a peace in that situation. Surely i should count all my blessings and if I can make it to 60 before I start a sharp decline then I shall be grateful of that - I have seen friends and family members suffer and die from other illnesses way before then.

It is a strange time for women who have become aware of this illness in their family. The progression of science in the last 20 years, providing a test for a gene where we can know the end outcome with so many unknowns, treatments or cures has put us in an ethically impossible dilemma. Some could argue that the actual test is unethical? When I went to the Drs to finally ask for the test, now that I feel ready to start a family, I was doing so to give my future children the best start in life - why else would I get the ****** test done (see not irresponsible after all) my doctor said to me "please, please, don't have children. This is such an awful illness and the only way to stop it is to stop the succession of the gene". This is some persons OPINION on your future decisions, not your own. If a doctor had said this to someone who had a child at risk of autism, chrons disease or to someone who had beaten cancer it would have been a scandal. Remember what YOUR human rights are and that you will decide what's best for you and your family. Could you offer more to a child than a faulty gene.

It is such a natural instinct to want to have children, and it can be so hard to just cross it off. When did we as a society become so afraid if the inevitabilty of death or illness. Does a disables child not experience moments of joy and happiness? Do they not add any value or worth to society? Is the risk not worth a shot at life? Can you experience joy, acceptance and peace before an illness takes hold?

Maybe I have been watching too much Brian cox and David Attenborough programmes but the wonders of the world never cease to amaze me. And in the grand scheme if things, I am the tiniest insignificant part of the universe, time - past and future. I'm 50% at risk and blessed to see and experience these wonders - THAT is what i want to pass on to my children.

Enough blathering from me, i hope you can smile about it all again! Life is fir living.
Oh my goodness, thank you for sharing such a beautiful perspective :)
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Old 29-08-16, 12:22 PM   #13
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Default Re: Baby decisions

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ATTENTION! ATTENTION! MAN ON BOARD!

Men are from Mars, Women are from … somewhere else!

It’s often said that that the possibility of getting Huntington’s disease from a parent diagnosed with the disease is down to the toss of a coin – a 50/50 chance. This isn’t quite right. It is surely the responsibility of the hd-spouse and partner to realise that one of them plus any children they create, in any which way, will suffer from the consequences of HD and, in effect, will have hd-by-association themselves.

Having to live with and Care for an individual with this disease is the most heart-rending, physically and emotionally draining situation that any one will “entertain” – at a significant cost to their own life. Everything changes – without doubt, everything changes [or stays in denial] in the lives of all associated family members.

My words, as a male, as a father, as an ex-husband, are not able to express everything I feel regarding this subject – but if some people feel that they can impose HD-by-proxy on future children, then there is something not quite right on the planet Venus.

1. It is such a natural instinct to want to have children, and it can be so hard to just cross it off?
2. When did we as a society become so afraid of the inevitability of death or illness?
3. Does a disabled child not experience moments of joy and happiness?
4. Do they not add any value or worth to society?
5. Is the risk not worth a shot at life?
6. Can you experience joy, acceptance and peace before an illness takes hold?

These are just half a dozen singular questions from above that do not fit the HD scenario – past, present or future. The disease will never disappear, especially with people like me coming along and upsetting the applecart. No family HD history whatsoever, yet my son was diagnosed with Young Onset HD in 2012. Reason: older father, sperm induced mutation causing expanded rogue gene with a CAG repeat count of 56. He and I [plus other family members] now have to live with this “paternal penalty” as my son’s life declines daily into a functional state of existence. I now have to fight, on his behalf, in this god-awful situation, with the DWP for ESA and DLA\PIP, Social Services, the local NHS trust, the NHS nationally, GP’s, Neurologists, HD Specialists, SALT’s, ever-changing OT’s, Physiotherapist, Nutritionist, family members, the public at large … and, no, there won’t be a cure, a fix-all for HD, in the near future – whatever your Geneticist or Neurologist may indicate.

No, it isn’t worth the risk at a shot of life. Self-worth and the "veil of ignorance" do not mean that you can endanger the lives of others. Men may be from Mars but some women, it seems, are from another planet.

Maybe we should adapt Nike’s “Just Do It!” logo to:

Just Deal With It! [take your choice from below]

1. … On a day-to-day basis
2. … One day at a time
3. … Once [or maybe several times] in a lifetime
4. … It might never happen
5. … As it happens
6. … When it materialises
7. … For as long as it persists
8. … Until the last aspirated breath.

.
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Old 30-08-16, 08:33 PM   #14
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Default Re: Baby decisions

Allan,

My jaw dropped reading this. What on earth were you thinking? I’m so angry my fingers are trembling as I type this. Your post is completely inappropriate. People come to this forum looking for supportive and safe place to discuss the most difficult decision of their lives and instead they are going to read your judgemental post. Well, at least now they’re going to read my response as well.

Before I start, let me remind you of my situation. I’ve terminated a much wanted pregnancy, which was soul-destroying, brought me to my knees and nearly cost me my marriage. I’ve tried the PGD route, hopeful and terrified, which took all of my energy and focus for over a year only for it to not work at all, which was traumatic and painful, both physically and mentally. I’ve learned the hard way that CVS and IVF PGD are not the magical solutions that the peppy articles on HDBuzz make them out to be.

I’ve have tried all the ‘right’ ways to have a child without HD and NONE have worked. I have agonised over what to do for years. You, on the other hand, know nothing. Reading articles on making HD-free babies does not make you an expert. We are dealing with a living hell that you have ZERO experience of. How dare you lecture and pass judgement. How dare you assume that we’re ignorant of HD and ‘mansplain’ HD to us. We’re in agony over making a decision because we know what’s coming, our loved ones have HD for crying out loud! I saw my father-in-law decline from HD for ten years and watched him die. I watched four of his brothers and sisters die from HD. My mother died of cancer when I was 10. I was my grandmother’s carer after she had a series of strokes. I will have to care for my husband once he starts developing symptoms.

And even experiencing all this and knowing what’s coming, I am still considering having a child without testing. I am still considering taking that risk. I’ve sacrificed everything, my physical and mental health, my happiness trying to do the ‘right thing’. I'm drained and don't feel like I have anything left to give. Time is running out for me and I’m fed up. I want children, a family, the same as everyone else but every time I've tried it's ended in tears and grief. I’m so FURIOUS about the unfairness of it all I want to punch random strangers in the face. Why them and not me?

You talk in grand terms about ‘endangering the life of others’ and ‘imposing HD’ on future children? Ok, I’ll bite. How about I take your point to it’s full conclusion? None of us ask to be born. Life is imposed upon us. None of us have any control over the events in our lives, every though we pretend that we do. Events happen all the time that we do not choose and do not want. Every person experiences terrible life altering events, illness, death amongst them, during their lifetime. EVERY person who decides to have a child is taking a calculated risk, a leap of faith that their child will be (mostly) healthy and live rich lives - it’s not just our unlucky little group. I was pregnant for a second time this year, stressing out completely about HD and the CVS test, only to have an ectopic pregnancy and lose both the baby and my fallopian tube. We make plans and God laughs, isn’t that the saying?

I agree that it’s unlikely there will be a cure, but in 20 or 30 years’ time there’s a good chance that there will be effective treatment. There are trials going on at the moment - you should know that, you post links to trial articles often enough. You say there will never be a cure, but none of us can see into the future, doctors, geneticists and especially not you. A child born now free of HD is not guaranteed a charmed life. A child born now with HD is not guaranteed a doomed life. This is what we are wrestling with on this forum, trying to make a decision without knowing the future.

I’m sorry that your son is symptomatic and that he is declining. I’m sorry that you’re having a difficult time with dealing with the horrible and energy sapping bureaucracy of caring for him. That does not however, give you the right to make posts like this. If you’re having a sh***y day dealing with HD, vent on the Carer’s page. Don’t come here and take it out on us. It’s bad enough that we have to put up with ignorant, judgemental comments in our daily lives without having to deal with the same from the HD community.

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Old 31-08-16, 01:43 PM   #15
lunel78
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Default Re: Baby decisions

Pollypanda,
Totally agree with your post!
I think Allan was right about one thing - men and women ARE from different planets.
There is no way a man could understand what a woman goes through to achieve a HD-free baby.
i.wonder's post made me look at the whole scenario from a completely different angle. Why is it that this generation of women of childbearing age are fully responsible for stopping the HD in their families? - it's just a confluence of timing with genetic testing and PGD IVF and CVS that these options are available. The disease might be stopped in some families because of the sacrifices these unselfish women make in either "choosing" (or feeling pressured) not to have children, or putting themselves through PGD IVF or CVS with the possibility of no successful outcome if all the embryos carry the HD mutation (forget the 50/50 - in my family it was 100% everyone had the gene when we found out about it 10 years ago).
Then there are families like Allan's and mine where we knew nothing of HD until a family member was tested because of their symptoms. That will continue to happen and so HD will never be completely eradicated as each generation discovers that something they knew nothing about suddenly rears its ugly head.
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Old 31-08-16, 08:51 PM   #16
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Default Re: Baby decisions

Thanks for your support lunel78. I'm glad that our posts are helping your understanding about what it's like to be in our situation and the pressure we feel.

I just want to pick up on one point. I re-read my post and can see why you might interpret that I think men cannot understand what it's like for women to try for a HD baby. I actually don't think that.

My husband understands because we're going through this together, we're a team. It's been just as much an emotional rollercoaster for him as for me. He attended all the IVF appointments with me (and there were many), stayed with me in hospital when I lost my babies, has attended all the pregnancy scans and CVS test. We've gone to couples counselling for four years and talked and cried and agonised over what to do. We attended genetics counselling to talk through our options. ALL of our decisions have been made together.

He is just as angry and upset as me at the unfairness of it all and is desperate to be a father. When I met him ten years ago he knew he wanted a boy and a girl and already had names picked out. He would prefer to not undertake the CVS test if I fell pregnant again. I am the one who is still undecided.

He doesn't post on here because he doesn't feel he needs it. I've found that to be true on a lot of these type of forums, women want to seek out others in their situation and share, men not so much. If there is a man on here who wishes to post I would welcome them.

No, my anger at Allan's post was that he assumed that if we were discussing the idea of not testing that we must be ignorant of HD and as irrational, baby-mad females, we needed 'educating' by a clear-headed logical male. He could not have been more condescending.
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Old 01-09-16, 10:21 AM   #17
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Default Maybe - decisions

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Hmm, positives and negatives …

I’ve been gradually easing away from the Message Board as it’s impossible to respond correctly to all individuals who arrive here - in an appropriate way. I always hoped that the HDA would take a more professional approach to dealing with the awkward situations in which most people find themselves - but it doesn’t seem that anything is likely to be forthcoming in the immediate future.

That being the case, and as they see this as a forum for individuals to speak their minds, well, that’s what we’ve done, isn’t it?

I often see this MB as a bottomless pit with everyone falling deeper and deeper because they rarely get positive responses about the disease or its symptoms, or the life-giving answers they are seeking. So, it becomes more of a place for expressing views, trying to formulate useful responses to those new to the disease and seeking advice.

I still maintain my views given above. They might seem to be a little abrasive but then again that’s possibly what’s needed at times.

I’m backing off to the Sports Pages now and taking control of the TV remote.

I am, however, with you all. All the way with your thoughts, dilemmas and futures.

Best wishes … ()

.
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Old 01-09-16, 02:58 PM   #18
lunel78
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Default Re: Baby decisions

Oh, I understand, Pollypanda.
My daughter is due to give birth end of this month - and went through CVS (I thought I passed on the HD gene, but when she tested and got her results her father had also passed on a HD gene - so the hope was in testing by CVS that the count would be the lower of the two).
Both my maternal grandparents passed on HD genes to their children - so their children, the two who didn't die of other causes, had two mutated genes.
Hence my remark about the 50/50 - if you have two parents with the HD gene that increases the likelihood of inheriting (though if the odds were in one's favour it would be possible to escape, I guess) - but my surviving aunt and uncle when tested in 2006 had two HD genes - which meant their children didn't have a non-affected gene from that parent.
So I do have some understanding of what it's like to be in your situation and the immense pressure you feel.
My comment about men was directed at the contents of Allan's post - not yours.
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Old 01-09-16, 10:05 PM   #19
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Default Re: Maybe - decisions

Allan,

You owe everyone here an apology and yet I don't see one in your post. That's hardly suprising, in my experience people who think they know best rarely apologise.

So after you blundered in here, rudely shouted ATTENTION! and told everyone on this thread that they were ignorant and wrong - what were you expecting? That you would be thanked for your illuminating perpective? That we would engage in a polite, thoughtful discussion with you on a raw and painful topic that you'd just trampled over? You say you want to provide useful advice, well that post wasn't useful nor advice, it was judgement.

On the basis that you seem unable to approach this topic with empathy or sensitivity I agree, you should avoid posting on the Genealogy pages and spend more time with the remote. Stick to what you know.

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Old 02-09-16, 06:52 PM   #20
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Default Re: Maybe - decisions

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Hi there

I never blunder in – it was a carefully considered, if somewhat rumbustious, approach. Yet again, your viewpoint doesn’t see my viewpoint – in my considered opinion. It’s as though they are on parallel tracks with few connections or cross-over points. People looking in will have their own viewing points and will, no doubt, come to their own considered conclusions. My views on many aspects of this god-awful disease are similar and close to most professional opinions. You will note that I have used the word “considered” three times: well-thought-out; and “opinion\s” twice: estimation, judgment and belief.

In the constant pushing and shoving for new scientific developments there are elements extended backwards [in time] and forwards [in creation] in a similar way that the roots of a tree thrust down into a deep history – and whose branches reach up, extensions to a future that, at first sight, has a fulfilled destiny.

As these intricate events constantly occur in the world around us, such as the opening of a leaf, the growth of a tree, the formation of an opinion - so disorder apparently recedes, but these events can never happen in isolation without somehow being “driven”. That “driven” event will eventually result in an even greater proportion of disorder elsewhere.

I can also assure you that I never tell anyone they are “ignorant” or “wrong”. I am seeking some form of decent wellbeing in the reconciliation of [medical] science, spirituality and the reality of everyday life here on Earth.

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