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Huntingtons Disease.

74 replies

Dragonbutter · 12/08/2008 14:41

I wondered if any other mumsnetters were coping with this disease in their families or even with their friends.
My grandmother had it and now my mother has it although is undiagnosed due to her denial. She is increasingly difficult to deal with and it causes me a lot of stress. I don't live near her and our relationship is very strained.
I wondered if anyones else was in a similar position.

OP posts:
alibubbles · 13/08/2008 19:47

dragonbutter, I don't have anything to add, but didn't want you to feel that there isn't anyone there for you. I don't think many people know much about HD, I knew a bit from seeing a documentary many years back, but have learned from the internet after knowing about my friends' DH.

She knows I understand what she is talking about, and I can ask the right questions, which I am sure she appreciates, but I am not sure many other people are in that position.

Eve34 · 13/08/2008 20:36

Drangonbutter, you are not alone in feeling liike that. It is huge and as you rightly say there is little to be positive about. It is hoped that within the next tem years there will be a suitable treatment to reduce the symptoms. That does not offer much to those that are suffering now but the future is hopeful.

I know that my reaction would be very much the same and can not even imagine where I would start.

You need to know that people are around if you need them. And just take each day as it comes.

Dragonbutter · 14/08/2008 12:20

Eve34, or anyone else,
does anyone know about the onset of the disease?
it seems that in my family the onset is later, when the person is in late 40s/early50s? although it may be just that the progress of the disease is slower in the beginning and not necessarily diagnosed.
is the onset familial like that?
or can other illness/stress bring things on quicker?

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fizzbuzz · 14/08/2008 14:37

I think the disease is worse when inherited from the father.

I think the only guidance they can give is it is a disease of middle adulthood. I have read that people often have symptoms for a long time (I think it was 10 years) before an actual diagnosis is made

Oh Dragon, I hope this helps a bit . How long have you known about it in the family? Are you still adjusting to it?

Blandmum · 14/08/2008 14:42

There isn't any effect of gender on the severity but some forms of the Huntiton's mutation are worse than others, in terms of speed and age of onset.

If you are unlucky enough to have two coppies of the defective gene (this is exceptionally rare btw) then the onset is much, much more rapid

Dragonbutter · 14/08/2008 17:07

It does seem to vary a lot within different families I think.

I've known HD was in my family when my grandmother was diagnosed. I think I would be about 9 or so. Her mother didn't live long enough to develop the symptoms so my grandmother didn't know it was a possibility. People initially thought she was drunk (she well have been too), and then they thought it might be something like parkinsons.

I remember my mum telling me about it, and i'm sure she told me when she found out so it was never a big secret.
My grandmother lived til nearly 70, and was at home until she died, her husband refused medical intervention as far as possible and I remember some fairly unconventional treatments (her hand was tied to the arm of her chair to stop her from hitting her face )

so fizzbuzz, it's not that I haven't known it was a possibility but more that i'm adjusting to the knowledge that my mother actually has it. I'd hoped for a long time she wouldn't, but hey, luck doesn't always fall on your side does it. hey ho.

MB, do you know anybody who has it?

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Eve34 · 14/08/2008 17:16

IT can be roughly predicted from the blood test which measures the CAG repeats. This will give a small indication of onset. It can develop at the same time roughly as other family members so if family members are getting the illness at a later stage in life it is possible that you will follow the same pattern. The CAG repeat is of a higher concentrate from a male parent so potentially a higher repeat is possible.

Blandmum · 14/08/2008 17:17

I don't know anyone with it, but I have to teach it in GCSE Biology and A level biology. It is the 'classic' example of an autosomal dominant condition.

The other ones that we have to cover are Cystric Fibrosis, Sickle cell, and haemophilia.

There are real genenetics experts on MN BTW. You should try to have a word with Tamum

Blandmum · 14/08/2008 17:17

Cystic! sorry. Can't type!

fizzbuzz · 14/08/2008 17:39

(((((hugs))))

Don't know what to say, I can only speak from my db's experience. He swung back and forth for about 2 years and then decided not to do test, and put it out of his mind, and decided to wait and see.

He told his kids and they were OK about it, they have not taken the test either. I kow this sounds odd, but I don't think they think about it much (my db incl) and have decided to adopt a wait and see approach.

How old are you if you don't mind me asking?

Dragonbutter · 14/08/2008 19:25

30

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Dragonbutter · 17/08/2008 20:39

bumping for blackrock

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blackrock · 21/08/2008 22:24

Our family has a genetic form of frontal lobe dementia, but not Huntingdons, with 50/50 passover. My father developed it 20 years before any other known case in the family at the age of 50.

My mother (not genetically linked to the disease) wanted us to be tested.

I do not want to be tested, or for my children to know until adulthood, when the time is appropriate. I won't hid it, which is what the previous generation did. We didn't find out the history until my Gt aunty, Gt uncle, grandma had died and my father was diagnosed. Suddenly we find that my Gt Gt grandmother and Gt Gt aunt died in an asylum. My Gt grandfather (the genetic link died young of an unrelated disease and the family relocated - which maybe why the story got lost.

Cannot help you with huntingdon's, but there is good advice out there and support.

I firmly believe that my children will perhaps have the advantage of being able to screen embryos (controversial I know) and then eliminate passing on the illness for the future.

I had a brief spell of counselling, which was helpful and will probably need more at a later point. We need to sort out the will situation too. Testing does effect insurance, etc.

blackrock · 21/08/2008 22:31

You are probably very aware of this.

www.hda.org.uk/

I think it be worth talking to someone here, I have managed to have contact with university specialists, who did reply to my questions. My father was of interest for research reasons... a positive for the future I guess.

Dragonbutter · 23/08/2008 00:14

thanks blackrock.

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Theochris · 23/08/2008 07:07

Hi Dragonrock, so sorry to hear you have HD in your family. I knew a family struggling with this too.

You are correct about onset. The pattern does run in families, onset and severity depend on the number of repeats of CAG in the huntington gene. So if you have fewer repeats the severity is less and onset is later.

I don't have personal experience of this, but to be honest in the case of this illness I would think very carefully about testing. Of course it could be life changing to be clear, but you would still be dealing with the very sad situation with your mum. Since there is no treatment until onset, I think for me it would be a stone best left unturned. I know you didn't ask about this - so sorry, I'm certain you think about it alot.

Just wanted to offer some support about your mum. It must be very hard, especially to see personality changes in someone you love/know really well. Kind thoughts go to you and your family.

Dragonbutter · 23/08/2008 21:16

Thank you Theochris.
I agree with you about a stone best left unturned. Everybody else lives there lives without knowing the future, why shouldn't I?

The personality changes are hard to deal with and I know I'm struggling with feelings that she is not here anymore, but of course she is still here. Sometimes I find it easier to avoid contact for a bit, but I know that's unfair. It's like a grieving process that can't progress and heal.

We spoke recently and she was really great. Was offering lots of support to me with other areas of my life and it felt nice that she was being 'mum'. So then i wonder if it's me that is writing her off before i really need to.

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Theochris · 23/08/2008 23:14

Hi, In some ways I think HD is a unique situation (it must feel like the sword of Damocles as well as a tragedy for your mum) . The distancing could perhaps not all about her but about you too. Try not to be too hard on yourself, you need to do what is right for you too and sometimes that might mean protecting yourself a little.

It's lovely that you have had some good recent chats. I hope these continue and I don't think it sounds like you are writing her off, just doing what you need to for you in someways. The way you feel doesn't impact on her so don't feel bad. I also think you sound lovely and it's only natural for us to want to be mothered by our mums and it can be hard to see that the status quo might change.

Have you have been offered some professional support with respect to your mums onset? It might be worth looking into? It might help to process your feelings, much like someone with a parent with dementia.

I agree with you about uncertainty, we all live with it whether we acknowledge it or not. The only thing I am certain of is that life can be incredibly cruel sometimes and good health should never be taken for granted.

Sorry for the long post, I have been thinking about this thread/your situation DB since this morning. As I said no personal experience of HD so feel free to disregard Some experience of heritable illness though, so it is stuff I think about.

Dragonbutter · 24/08/2008 22:07

gosh, the sword of damocles eh?

can i pretend i didn't have to google that?

i think i could get some support from a local HDA person and might look into it. but with the kids around all the time i find any sort of counselling fairly impossible.

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Bubbaloo · 29/08/2008 08:05

Dragonbutter-don't know if you're still around but I may be of some help if you want to CAT me.

BeachBunni · 29/08/2008 09:13

Sorry to hear about your family dragonbutter.

I have a friend whose family suffers from this condition (her dh side - he had it too and started showing symptoms about 40). It was a hard decision for her to have children but she thought there was no point putting what they wanted on hold for a 'what if?' and wants her children to make up their own minds about testing when they are older. As yet, they haven't done it - although they are just 18 and 20 so they may decide later in life.

Dragonbutter · 29/08/2008 21:28

Feel free to CAT me Bubbaloo.

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Bubbaloo · 29/08/2008 22:15

Thanks-have CAT you.

Dragonbutter · 09/11/2008 21:44

Sorry to those that CAT'd me on this subject but i'm worried about getting too personal and my RL name being available should i return the emails.

Please feel free to post on this thread. Hopefully we can carry on chatting here.
Thanks.

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