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Original poster

Does anyone know much about Huntington's Disease?

73 replies

freerunner · 26/12/2007 23:20

I've just found out that my grandad has it and that it is hereditary. A bit scared really! Two uncles and an aunt on my dad's side also have it. Has anyone had the test and what does it involve? TIA!

OP posts:
Tamum · 28/12/2007 22:06

Eve34 has covered all this but I lecture on HD to medical students, so can also answer any questions you have. Bossy, it's been known for many decades that it's an autosomal dominant, so it's never been in doubt that both sexes are affected.

Freerunner, how old was your grandfather when he was first affected? He's your father's father, is that right? You might want to check whether he had the test and what repeat number he had, as that could affect your decision potentially. I would recommend Nancy Wexler's essays very strongly- her mother had HD and she was involved in identifying the gene and developing the test and for a long time chose not to know whether she was at risk. They are at www.hdfoundation.org/bios/nancyw.php, which is a generally wonderful site.

Tamum · 28/12/2007 22:08

Probably the most relevant essay. Good luck with it- I always thought I would want the test, but now I am faced with my father having the same type of Parkinsonian dementia as my grandfather I realise I couldn't bear the thought of a positive result.

Tamum · 28/12/2007 22:14

Oh, sorry- one more thought. You and your dad are going to have to tak about this- if you have the test and are positive then it is condemning him to knowing that he too is going to get the disease. It is possible that they won't agree to test you unless he agrees too- I know in the US many counsellors (if not all) value privacy over knowledge, so your father's right not to know would supercede your right to know.

Original poster
freerunner · 28/12/2007 22:20

Hmm, my dad doesn't talk. He disappeared when I was a toddler and I didn't see him for 24 years til I knocked on his door a year ago. He's more bothered about his cans of lager. I really couldn't stomach talking to him right now. As for my grandad, I hve no idea what tests he's had, or how old he was when he was diagnosed. And I doubt my dad would know/remember either

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Tamum · 28/12/2007 22:24

I am sorry freerunner. I don't really mean you have to talk to him face to face, but through a counsellor- I honestly don't know that they will be willing to test you otherwise. It's not a great situation, is it .

fizzbuzz · 29/12/2007 11:26

I don't think you should make any rush descisions about taking a test. I think you should let it sink in.

When my db found out, he immediately wanted the test, but later decided not to take it

mygirllollipop · 29/12/2007 20:31

How are you today babe? Hope you managed to sleep well last night? Give those kids a kiss and cuddle from me and DH (oh and wish us luck with the PIL tommorrow!).

Shaniece · 29/12/2007 22:19

Someone in my BIL's family has Huntingtons. He is in his forties and in some hospital and unaware of whats going on .

I woud'nt want the test done myself.

Good Luck on whatever you decide.

Original poster
freerunner · 30/12/2007 22:33

I told my mam. She's going mad. I wish I'd kept my mouth shut now.

OP posts:
Eve34 · 30/12/2007 22:56

You have done the right thing. She needs to know just in case either you and or your sister has the disease she will need to have some knowledge. ALthough I pray both of you have a negative test. Both of you need to know so that you can make an informed decision. It wouldn't be fair to keep this information to yourself. Please please go and talk to the gentics team at the hospital they will help you talk through the plus and negative of taking the test. Did you look at the message board?

Eve34 · 30/12/2007 22:57

Why she mad any way?

Eve34 · 30/12/2007 22:58

www.hda.org.uk/board/index.php

Give it a look.

Eve x

Original poster
freerunner · 30/12/2007 22:58

Thanks. I have had a look at the website. How do I get an appointment at the hospital? Can I ring them myself? My doctor was beyond useless and didn't even know what HD was!

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Original poster
freerunner · 30/12/2007 22:59

My mam is angry with my dad. As usual. They haven't spoken since circa 1984!

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Eve34 · 30/12/2007 23:02

Your GP will need to make the appointment for you as far as I know But might be worth givign them a ring and asking. It is different depending on where you live. Where abouts are you?

Sure your dad wouldn't wish this on anyone. But hey that is families for you

Tamum · 30/12/2007 23:02

I don't know if it differs in different health authorities but usually you need a referral from a GP. I think you can just go and see him again and specifically ask that he refers you for genetic counselling though. I still think they may not do anything without your dad's involvement though.

Original poster
freerunner · 30/12/2007 23:04

Yeah, my mam is fuming because she thinks my dad should have told us a lot sooner, before we both had children. I'm in Newcastle.

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catsmother · 30/12/2007 23:05

I really feel for you. You must feel very shocked and scared.

My ex has HD in his family, but it wasn't officially diagnosed until 1990 and various "symptoms" within the family previously which, with hindsight, had probably been HD were attributed instead to various mental illnesses and alcoholism (though of course the 2 conditions aren't mutually exclusive).

His mother was the 1st in the family to be diagnosed and we were told, by a social worker, to "think hard before starting a family" ..... when I was 7 months pregnant (but wearing a big coat !). Needless to say, it was very frightening. At the time, there was no predictive test available .... I think it was introduced in 1995. Thankfully my ex is clear, meaning that my son is clear too. However, 2 out of 3 of his siblings will get it .... last I heard, I think the 3rd doesn't want to know.

His mum was diagnosed when she was in her early 50s but there had been several years past history of SS involvement, sectioning, alcoholism, disturbances with neighbours and so on .... which were almost certainly symptoms. She died I think about 2 years later, from a nasty accident, but sadly, so far as I remember, this was caused by her lack of co-ordination (and therefore vulnerability) as opposed to directly from HD, but I suppose the disease was to blame.

I hope I'm not terrifying you but it would be stupid and insulting to pretend this disease is pleasant.

If you do decide to have the test, I think you will undergo counselling beforehand .... I don't imagine they will just do it in a "matter of fact" way. I am so sorry you are having to face this ..... I can remember the 5 or so years I lived with the idea of it affecting my child and it was a gut-wrenching thing which you could forget about most of the time but which, when it popped into your thoughts, was devastating. I'm also very sorry your dad isn't prepared to have the test ..... I know it's a dreadfully scary thing to do, but if he did it, he might be able to put a stop to your anguish sooner than later, if he's not inherited the gene of course.

Eve34 · 30/12/2007 23:11

Bet you wouldn't change your children for the world though. You are blessed to have a wondeful family with them. Enjoy. Anything could happen to anyone and at anytime. I know the Potential of HD in the family and your children being at risk is something we wouldn't wish on a sole, but I bet they are the love of your life. Imagine how different life would of been without them.

Boogalooblue · 30/12/2007 23:13

Haven't read through but there was a children's book published about 15 years ago by Walker Books or Helen MaCrae imprint called Tinker's Career (she - Tinker, misheard Huntingdon's Chorea as Tinker's Career).

I have been reliably informed that it only shows up in the female of the species.

Good luck with the research, sorry I can't be of any help, a distant relly has it in her family but no blood connection to me.

Original poster
freerunner · 30/12/2007 23:17

Thank you all so much. I don't really have anyone to talk to about this right now. My mam is too upset at the moment. I have printed the factsheet and will go back to the GP armed with information and get this sorted!

OP posts:
Original poster
freerunner · 30/12/2007 23:20

Boogalooblue - I wish that was true. Unfortunately my grandfather is most definitely suffering. He cannot talk and jerks constantly. It's really frightening to watch. My dad also has a brother - I have never met him and he is rarely mentioned. He has two daughters too

OP posts:
Tamum · 30/12/2007 23:20

There's an excellent clinical genetics department in Newcastle, so you should be able to get a referral there quite easily. These are the people you want Good luck

Boogalooblue · 30/12/2007 23:22

Just in case you were interested in the kids book here is a link Tinker's Career.

Have now read through thread and am totally wrong about the female link sorry

Eve34 · 30/12/2007 23:27

Hope that you get an appointment quickly. Keep in touch am sure I am not alone in offer you a listen ear. x