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Testing, or at risk Discuss testing for Huntington’s disease, and living with the risk of HD

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Old 12-05-10, 04:08 PM   #1
EachOne
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Default Is there such thing as 'Mild HD'

Hi, I have already made a thread about my situation but I was just wondering, is there such thing as Mild HD, can someone have the HD gene but not have the full (and frankly terryfing) syptoms that I have seen and heard about or once someone has the HD gene, it's certain that they will just go further and further down hill?

Thank you for any replies
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Old 12-05-10, 10:48 PM   #2
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Default Re: Is there such thing as 'Mild HD'

Hmmmmmmmmm

This is a difficult one to answer.

HD varies from person to person

As a general rule, the later in life HD becomes symptomatic, the slower the progession of the illness. Symptoms usually appear between (very roughly) 35-55, but there are people in my HDA branch who developed symptoms at ages 65 and 70!

Comparing progression between relatives is no good, by mother in law went downhill very fast, was in a home at 50 years old and died at 60. Her daughter (my wife) is 60 next year and is in a much better state of health.

Certain drugs, good diet & excercise, varioius therapies can all help to reduce symptoms and slow down the progress of HD

Its helpful iof the sufferer is under the care of a consultant that understands HD. There are HD clinics in London & Cambridge for example.

If you find out who your care advisor is then you can get a lot of information from them.

Hope this helps
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Old 12-05-10, 11:08 PM   #3
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Default Re: Is there such thing as 'Mild HD'

HD is fatal, if you have the HD gene you will suffer that fate. No one can escape that part of it sadly. However people will have different symptoms and while some will have very bad uncontrolled movements, others will suffer more from the mental aspect from HD. So people with HD will suffer in different ways but the end result is the same I'm afraid.

Tc, Matt.
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Old 13-05-10, 07:37 AM   #4
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Default Re: Is there such thing as 'Mild HD'

Jacqueline is so right. There is hope and a lot to look forward to. Progress is slow but people are working hard to make it a reality. I read an article ages ago by the great Nancy Wexler. She said her idea was not necessarily to find a cure but to find a treatment that would make the average age of onset 110 years. Thereby blowing the disease out of our natural life time.

I'm also inserting a link to a thread by DH about the PREDICT HD study that has been running for quite some time. Read it carefully. There is certainly a good cause for hope.

There are so many things that you can do to take charge and have a little control over it. These methods are not proven, yet, but they are not in anyway harmful so are always worth considering. When first learning of this disease it felt like such a hopeless case. I don't necessarily feel that way any longer. ( Until I decide to spit my dummy out occassionally) I know there is a long, long way to go, but we have started the journey.

http://www.hda.org.uk/board/showthread.php?t=1998
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Old 13-05-10, 08:18 AM   #5
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Default Re: Is there such thing as 'Mild HD'

Aw, that made me smile! A little bit of hope! thanks so much guys.
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Old 13-05-10, 10:21 AM   #6
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Default Re: Is there such thing as 'Mild HD'

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Originally Posted by jacqueline View Post
The main thing Eachone is to try and do what makes you happy as that has a bearing on everything in in life whether you have an illness or not.
A positive attitude is what works as well. Difficult in the circumstances but well worth the try and it is one that will at least make you feel a lot better. Your dad will also benefit from having positivity around him.
I do try to practice what I preach but sometimes it does get the better of me, but not for long. When I am not being positive it affects my son too so even if I am not positive I have to let him think I am.
At least you now have us too Dave.
Thank you, this forum is a great comfort!

The thing is, I am in a dilema because I don't know whether to discuss with this my dad, he unaware about symptoms of HD and the 50:50 chance etc. He calls it all 'rubbish', he knows he is not as tough as he was, but he is 56 so he just puts it down to getting old. I've been telling him I love him loads and even giving him rare hugs in these last 2 days and he thinks I want some money or something!

I see it as, if I tell him about HD and how he matches with the symptoms it could break him, where as now he is happy and oblivous (along with my mum and sister)

What would others do?
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Old 13-05-10, 11:08 AM   #7
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Default Re: Is there such thing as 'Mild HD'

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Originally Posted by jacqueline View Post
Is your mum still living with your dad?
In this case if it was me I wouldnt tell him because it just may tip the scales.
My ex hubby wouldnt accept that he has HD as he hasnt been tested but our eldest son reqeusted the test and was positive so obviously his dad is.
His Dad attended the St Mary's with us as we are still very good friends and I see to all his paper work and lots of things he needs sorting out.

When our son got his result we all came out of St Mary's and our son said to his dad in my car "well! I have it so you have it too dad"
His Dad sais " No, it has either missed me and got to you or it has come from your mums side" I told his dad that was good reasoning and denial but wasnt true. He just shrugged his shoulders. I laughed it off.
Since then his dad has accepted that it has come from him but doesnt talk about it, apart from feeling guilty which even then it has only been spoken about twice.
His Dad has let me get him Attendance Allowance though which took around 18 months of persuasion from me. I just let him sign the forms and then I filled them in for him and sent them without letting him see what I had put. He got the high rate.
Thanks for replying.

Yeah, My mum still lives with my dad, though my mum is disabled but yeah they live together, along with me and my sister (I was meant to be going to Uni in September, but now I'm not sure if I should, My sister is is 17).

I'm thinking the same as you, at the moment he is unaware and it's fine, but I just can't help but feel terrible, and I might be worrying for years about nothing incase he has not got it. I have looked on the site for the 'care advisers' what exactly is the job of these people?
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Old 13-05-10, 11:34 AM   #8
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Default Re: Is there such thing as 'Mild HD'

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Originally Posted by EachOne View Post
Thanks for replying.

Yeah, My mum still lives with my dad, though my mum is disabled but yeah they live together, along with me and my sister (I was meant to be going to Uni in September, but now I'm not sure if I should, My sister is is 17).

I'm thinking the same as you, at the moment he is unaware and it's fine, but I just can't help but feel terrible, and I might be worrying for years about nothing incase he has not got it. I have looked on the site for the 'care advisers' what exactly is the job of these people?
I have just looked on the website about the care advisers so no need to explain now .
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Old 13-05-10, 02:19 PM   #9
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Default Re: Is there such thing as 'Mild HD'

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Originally Posted by jacqueline View Post
It does sound very grim the way you put it Matt. What good is life or any illness without any hope.
In fairness Jacq the question wasn't about research, it was about whether the HD gene is fatal for everyone... I simply answered the question. I like the answer as much as you do, but that's how it is right now.
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Old 13-05-10, 02:31 PM   #10
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Default Re: Is there such thing as 'Mild HD'

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Originally Posted by just1moreperson View Post
In fairness Jacq the question wasn't about research, it was about whether the HD gene is fatal for everyone... I simply answered the question. I like the answer as much as you do, but that's how it is right now.
I have to say I agree with Matt here. The question was can someone get "mild HD" & not develop full symptoms.

Whilst we all agree that the severity of symptoms can vary from pHD to pHD as can the speed of the progression it's a bit like saying can someone get "mild AIDS". The answer is NO.

If you have HD it will kill you UNLESS a cure is found & yes we all pray for a cure & there has been good progress on that front but as of today there is no cure & no effective treatment. Those are the unfortunate facts.

My personal opinion is that most pHD bring enough denial into the equation without the rest of us denying the truth.

Which is not to say that positive thinking isn't a good thing.....
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