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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:
KatyMac · 26/12/2007 23:23

have you had a look [[http://www.hda.org.uk/charity/whatishd.html here}?

Original poster
freerunner · 26/12/2007 23:29

Thanks. I did have a look, it doesn't say much about testing though. My dad doesn't talk about it, it was my stepmum that told me - and he won't be tested so we don't know if he has it or not

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KatyMac · 26/12/2007 23:34

I think the problem with the test is that it says whether or not you have it, but not when you will get it.

So if your Dad had the test it might say he has the gene but he could die of cancer/heart attack before it becomes visible, or it could start next week - so the test is very limited

But if the test is positive it is basically a death sentence - just it could be a couple of months or 70 yrs, so it doesn't help much apart from family planning - if you have the gene do you choose to have children in the hope that a cure has been found by the time they are adult or not

That is really depressing (esp on Boxing Day) - sorry

Woollymummy · 26/12/2007 23:38

How old is your dad? I think Huntington's kicks in anytime after 30 or 40, so has he any of the symptoms? I am sorry for you about you grandad, I hope it has not been too hard for him.

Original poster
freerunner · 26/12/2007 23:44

I have only known my dad for just over a year and he finds it hard to talk about anything! My dad is 50 and is an alcoholic (which really doesnt help matters). I was only told because they put my grandad in a care home on Tuesday after he had a nasty fall and flooded his house (!) and they had to tell me why he wasn't there for lunch yesterday.
I have three kids and I am praying they haven't got it!

OP posts:
Millarkie · 26/12/2007 23:44

I seem to recall that you need to have a lot of counselling before having the test (normally a blood sample is taken and the DNA tested). If you are found to carry the gene it can affect things like life insurance. Also, if you or any other of your Dad's children are found to carry it and they tell your Dad then he will know that he carries it (which is obviously not information he wants to know at the moment).
Can you see if your GP can arrange a referral to a genetics specialist?

I also think that there are some strategies for prenatal testing available (if you are thinking of having (more) children), which can either detect the gene (if you know you are a carrier), or detect a 'high' risk pregnancy (where you don't have to know your carrier status but may only want to continue with pregnancies which carry that particular chromosome from their other grandparents rather than the one from your Dad)

Millarkie · 26/12/2007 23:47

This gives some information

Original poster
freerunner · 27/12/2007 00:17

Thank you so much. I'm going to get a GP appointment as soon as poss. I'm dreading telling my sis, she went through hell to have her babies (2 very prem and one died hours after birth) - I think I'll keep quiet about it for now. Nite all x

OP posts:
mygirllollipop · 27/12/2007 10:30

Have MSN'ed you. Hope everything turns out OK.

Original poster
freerunner · 27/12/2007 18:54

Hiya. Been to see my GP - what a complete waste of time! I basically had to tell him what it was and why I think I could be affected, so he is writing to the Institute of Human Genetics for advice! In other words it could take months.

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Eve34 · 27/12/2007 19:10

Hi ya. I am a regional Care Advisior for Huntington's Disease Association. Children of the affected parent are at 50% risk. If your parent has not been tested you are at 25% risk. Ethically if your parents have not been tested it can be difficult but depends were you live. The GP should of reffered you to the gentics team at your hospital who will give you 3 counselling sessions and take blood test. You do not have to go and get results if you change your mind.
Let me know if you need ot know anything else. Can post you some info if that will help.

Eve

bossybaublesinherbritches · 27/12/2007 19:16

Eve am I right in thinking males are sufferers & females carriers? I studied this in Nursing years ago but don't remember?

Eve34 · 27/12/2007 19:17

Just read through. HD is messured in CAG repeats. The higher the number the sooner the symptoms will start. If you choose to have further children you can have them through IVF so that the gene isn't passed on. Symptoms start between the ages of 30-50 normally. And the prognosis from there is approx 15-20 years. Every affected is different. Do not look at your father/grand father and think you will follow the same path. You will need to let Mortgage, insurnace people know you have the gene in your family. see the HDA web site for a very good contact on life insurance. Also there will be a Regional Care Advisior in your area if you feel you would like the support or need to talk to someone who is in the know ref HD. Hope that helps

Eve

Eve34 · 27/12/2007 19:18

Both males and female are equally at risk of having the gene. Once you have the gene you will become symptomatic in the future.
although we are very positive about up and coming treatments.

themoon66 · 27/12/2007 19:23

When I was nursing, a long time ago, I nursed equal numbers of men and women with HD, so I don't think gender has any bearing on things.

bossybritches · 27/12/2007 19:45

Ok thanks-remembered that wrong then-mind you it might have been the perceived thinking in those days we are talking over 20 years ago!

Freerunner a great worry for you do take up all the counselling & tests you need for your peace of mind.

fizzbuzz · 27/12/2007 20:41

I think the older you get, the lower the risk of getting it is. I,m adopted, but it is in my adopted family, and whilst it doesn't affect me, i did a lot of research about it.

There is always a 50% chance of inheriting it, BUT symptoms tend to come on in mid adult hood e.g 30's and 40's. The further into your 50's you get without showing symptoms ther less likely you are to have it. I rememebr heaving a sigh of releif when my brother hit 50. He's 54 now with no signs, although my sister has it

fizzbuzz · 27/12/2007 20:43

Some symptoms can start very early, looking back it was definitely evident in my sister's personality from a vey early age (mid teens).

However it wasn't really obvious she had it until she was about 43

AGlassOfMerlot · 28/12/2007 12:27

I know someone that developed Huntingtons disease in his 40's, he is in a hospice now and is more or less a vegetable. The son has got the gene & he is in his 20's . He split from his GF because of it (she wanted kids he didn't for obvious reasons).

AFAIK , like another poster said, the test will tell you if you have the gene or not & I think this means you will develop it but it doesnt tell you when. I personally wouldnt want to know. Are you considering having the test??

Huntingtons is an awful thing to have .

Original poster
freerunner · 28/12/2007 21:30

Thanks for all your replies. I've googled a bit too much now, this is really scaring me. I NEED to know if I have this, but the whole testing process is going to take ages. I'm so angry with my dad for not telling me sooner. My mam had no idea and is telling my sister on Monday.....

OP posts:
missyprissy · 28/12/2007 21:38

freerunner - are you considering having the test? You REALLY need to ask yourself do you want to know - I wouldnt personally.

I have heard that Huntingtons is more a male thing? Not saying women cant get it but I have heard its more likely to be passed on to males in the family not females.

Original poster
freerunner · 28/12/2007 21:43

I would take the test today if I could. Women are just as likely to inherit HD as men.

OP posts:
missyprissy · 28/12/2007 21:53

freerunner - so if you have the test and get told you have the gene what would you do about it?

Eve34 · 28/12/2007 21:55

Free runner I am so sorry you are in this situation. the HDA website has a message board and there is a thread ref to test or not to test. Also the care advisor in your area will be happy to spend some time and talk with you and your sister. Keep in touch.
Eve x

Original poster
freerunner · 28/12/2007 22:00

Thank you. I will have a look at the website. It really is a lot to take in.
If I do find out I have it then I will do all the things I have planned on doing in the future ASAP. Like travelling, finishing my degree..... there's so much I'm gonna do! And if I haven't then it will be such a relief. I think it is better that I know either way, rather than spend all my time worrying about it.

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