Huntington's Disease Association Lifeline


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Huntington's Disease Association

EastEnders actor Shane Richie makes an appeal to raise funds for the Huntington's Disease Association, a charity for which Shane is patron.


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You should have seen us. We had tea brewing on the camping stoves,

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-barbecues lined up all along the pavement.

-Sausages!

-Yeah.

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Seven years ago, EastEnders featured a character, David Collins,

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who was suffering from an incurable

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and degenerative illness called Huntington's disease.

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NEW!

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Everyone in the cast and crew of EastEnders was moved

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by this particular storyline and we did receive lots of mail.

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Amongst the people who wrote to me

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was one young lady in particular who sadly suffers from this disease.

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I actually went up to Yorkshire to surprise her

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and since that visit I've tried to do all I can

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to help people affected by this awful disease.

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This is John with his wife Norma and son Matt.

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John was a very enthusiastic person, he had always plenty of life.

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He was a great dad.

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He was a very nice man, kind man, who enjoyed to laugh and have jokes

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and be stupid at times as well!

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At the age of 40, John was diagnosed with Huntington's disease -

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a neurological disorder that affects around 8,000 people in the UK.

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We first realised something wasn't right

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when John couldn't keep still, his legs mainly.

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He was very fidgety.

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It was just something he couldn't actually control.

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Huntington's disease is a rare and complex illness,

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and some doctors may not have even encountered it before.

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I am honoured and proud to say

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I am now a patron of the Huntington's Disease Association -

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a charity that provides much-needed support

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to sufferers and their families.

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That's a nice one, with Nan and Grandad and the view behind.

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Symptoms of the disease typically appear

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between the ages of 35 and 50.

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Sufferers can experience speech difficulties,

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uncontrolled muscle movements and dementia.

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Ten years after diagnosis, John's health greatly deteriorated.

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John wasn't able to dress himself, wash himself, he wasn't able

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to eat, speak, walk, there was very little he was able to do, really.

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He just sat in his chair.

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He could do very little at the end.

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John was 54 when he died.

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Norma had given up work to look after him in his final years.

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There is currently no cure for Huntington's disease,

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and life expectancy is around 20 years after symptoms begin.

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Huntington's disease is caused by a faulty gene that can be

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passed down through the generations.

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Every child of a person who has the disease has a 50% chance

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of inheriting the gene, and everyone who inherits the gene

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will at some stage develop the illness.

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The disease can devastate families.

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Having watched the disease take hold of his father,

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Matt knew he faced a difficult decision.

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I began thinking about testing as soon as I'd become a carer for my dad.

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I think just being around Huntington's that much

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makes you think about your own risk for it.

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There's lots of information in there...

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Such a huge decision requires a great deal of guidance.

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The Huntington's Disease Association, or the HDA,

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has a personal advisory team to equip young people

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with the information they need to make this vital choice.

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If you've got any questions after you've read it, any things

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you're not sure about and you want to ask me, just give me a call.

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Grab the other end. Here's a peg.

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Matt was 19 when he was tested for Huntington's disease.

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He had to wait two weeks for his results.

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You just want a positive outcome. You want it to be the right news.

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It was a very long two weeks.

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Living with Huntington's disease can be a huge struggle.

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50-year-old Richard lives by himself in Birmingham.

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He tested positive for the faulty gene at the age of 30.

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Last year, Richard was forced to give up his job as a shop assistant

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and take early retirement.

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He now experiences mood swings, jerky body movements

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and speech difficulties.

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Well, my speech is... I think it's getting more...

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for people to understand, it takes me

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a little bit more to actually say words correctly out of my mouth.

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I've got more jerks and more twitches and my movements walking.

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The charity is there to help people like Richard

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who are living with the disease.

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Hello there, Jackie.

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Hi, how are you?

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It has 20 specialist care advisors, like Jackie, who visit sufferers

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and their families at home to offer practical and emotional support.

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If speech therapy was going to be helpful, would you want

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a bit of help about that?

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Well, yes, I think I might have it but at the moment

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I don't think my speech is... that I really need it.

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Jackie has been visiting Richard since his symptoms began.

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I think the world would be very frightening

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if this charity wasn't there.

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Is that the one that he won last year? Is it the Carling one?

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Yeah, McLeish is manager now.

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Despite always wanting a family of his own, Richard made

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the decision not to have children for fear of passing the disease on.

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He now has four godchildren, including 16-year-old Ben.

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I have to take every year as it comes.

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I'm just very grateful for each year.

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Having watched his father battle with the disease,

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Matt had decided to be tested for the faulty gene.

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Two weeks later, Matt and his mum went to collect his results.

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The genetic nurse opened up the envelope

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and said, "I'm really sorry." I just broke down,

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because I knew then that it was bad news.

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Er, it's the worst thing in the world

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to hear that you've passed something like this on to your son.

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So it was awful.

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After you've had your results, it's really quite a surreal experience.

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Your whole life had just changed at that point

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and it's almost too much to comprehend.

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People who test positive for Huntington's disease

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have to live with the prospect that, while healthy now,

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at some point in their future the first symptoms will appear.

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This can be an enormous weight to bear.

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The charity is there to help people cope with this burden

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and prepare them for what lies ahead.

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It runs support groups which give sufferers

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and their families a place to share their experiences.

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Just discussing it with people

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and having that support, being able to talk with people

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that have also tested positive, it gives you great insight.

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Four years after he tested positive for the faulty gene,

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23-year-old Matt is determined to live life to the full.

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This year he is running 15 marathons around the world

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to raise money for the HDA.

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You can't avoid thinking about Huntington's disease.

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It's certainly on my mind every day.

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I know that at some point I will have symptoms. I'll be needing

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a lot of the support that the HDA's providing

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and I know that I can trust them to provide that support.

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With your help, the Huntington's Disease Association can provide

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the specialist care that sufferers and their families

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so desperately need.

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So please donate online.

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If you haven't got access to the internet or a computer,

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please give us a call.

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If the lines are busy, please, please, please keep trying.

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Calls are free from most landlines.

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Some networks and mobile operators will charge for these calls.

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If you'd like to post a donation, please make your cheques payable

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to Huntington's Disease Association

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and send it to...

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Remember, if you're a UK tax payer,

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the charity can collect Gift Aid on your donation, worth another 25%.

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Just send in a note to say you want your donation to be subject to

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Gift Aid, and include the date, your full name and address.

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Thank you.

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EastEnders actor Shane Richie makes an appeal to raise funds for the Huntington's Disease Association, a charity for which Shane is patron. Shane became involved in 2004, when EastEnders featured a character who was suffering from the incurable and degenerative illness. A viewer suffering from the disease wrote to Shane personally, and he has since met her and they have become family friends. Shane now works to do all he can to help people affected by this hereditary neurological disorder, which slowly causes dementia and difficulties with speaking, swallowing and walking.

The film features Richard, who is in the middle stages of the disease; and Matt, who lost his father to the disease and knows that he too carries the gene. Matt talks about how, with the help of the Huntington's Disease Association, he is coming to terms with the fact he will also start showing symptoms at some point in the future.