0:00:07 > 0:00:10You should have seen us. We had tea brewing on the camping stoves,
0:00:10 > 0:00:15- barbecues lined up all along the pavement.- Sausages!- Yeah.
0:00:15 > 0:00:19Seven years ago, EastEnders featured a character, David Collins,
0:00:19 > 0:00:21who was suffering from an incurable
0:00:21 > 0:00:26and degenerative illness called Huntington's disease.
0:00:26 > 0:00:27NEW!
0:00:27 > 0:00:30Everyone in the cast and crew of EastEnders was moved
0:00:30 > 0:00:34by this particular storyline and we did receive lots of mail.
0:00:34 > 0:00:35Amongst the people who wrote to me
0:00:35 > 0:00:40was one young lady in particular who sadly suffers from this disease.
0:00:40 > 0:00:43I actually went up to Yorkshire to surprise her
0:00:43 > 0:00:45and since that visit I've tried to do all I can
0:00:45 > 0:00:48to help people affected by this awful disease.
0:00:52 > 0:00:57This is John with his wife Norma and son Matt.
0:00:57 > 0:01:05John was a very enthusiastic person, he had always plenty of life.
0:01:05 > 0:01:07He was a great dad.
0:01:11 > 0:01:18He was a very nice man, kind man, who enjoyed to laugh and have jokes
0:01:18 > 0:01:20and be stupid at times as well!
0:01:23 > 0:01:26At the age of 40, John was diagnosed with Huntington's disease -
0:01:26 > 0:01:31a neurological disorder that affects around 8,000 people in the UK.
0:01:33 > 0:01:36We first realised something wasn't right
0:01:36 > 0:01:39when John couldn't keep still, his legs mainly.
0:01:39 > 0:01:41He was very fidgety.
0:01:41 > 0:01:46It was just something he couldn't actually control.
0:01:46 > 0:01:50Huntington's disease is a rare and complex illness,
0:01:50 > 0:01:53and some doctors may not have even encountered it before.
0:01:53 > 0:01:55I am honoured and proud to say
0:01:55 > 0:01:58I am now a patron of the Huntington's Disease Association -
0:01:58 > 0:02:00a charity that provides much-needed support
0:02:00 > 0:02:03to sufferers and their families.
0:02:03 > 0:02:07That's a nice one, with Nan and Grandad and the view behind.
0:02:07 > 0:02:09Symptoms of the disease typically appear
0:02:09 > 0:02:13between the ages of 35 and 50.
0:02:13 > 0:02:15Sufferers can experience speech difficulties,
0:02:15 > 0:02:19uncontrolled muscle movements and dementia.
0:02:19 > 0:02:24Ten years after diagnosis, John's health greatly deteriorated.
0:02:24 > 0:02:28John wasn't able to dress himself, wash himself, he wasn't able
0:02:28 > 0:02:35to eat, speak, walk, there was very little he was able to do, really.
0:02:35 > 0:02:38He just sat in his chair.
0:02:40 > 0:02:43He could do very little at the end.
0:02:44 > 0:02:47John was 54 when he died.
0:02:47 > 0:02:52Norma had given up work to look after him in his final years.
0:02:52 > 0:02:55There is currently no cure for Huntington's disease,
0:02:55 > 0:02:59and life expectancy is around 20 years after symptoms begin.
0:03:03 > 0:03:07Huntington's disease is caused by a faulty gene that can be
0:03:07 > 0:03:09passed down through the generations.
0:03:09 > 0:03:13Every child of a person who has the disease has a 50% chance
0:03:13 > 0:03:16of inheriting the gene, and everyone who inherits the gene
0:03:16 > 0:03:19will at some stage develop the illness.
0:03:19 > 0:03:21The disease can devastate families.
0:03:23 > 0:03:26Having watched the disease take hold of his father,
0:03:26 > 0:03:29Matt knew he faced a difficult decision.
0:03:29 > 0:03:33I began thinking about testing as soon as I'd become a carer for my dad.
0:03:33 > 0:03:36I think just being around Huntington's that much
0:03:36 > 0:03:39makes you think about your own risk for it.
0:03:39 > 0:03:42There's lots of information in there...
0:03:42 > 0:03:45Such a huge decision requires a great deal of guidance.
0:03:45 > 0:03:48The Huntington's Disease Association, or the HDA,
0:03:48 > 0:03:51has a personal advisory team to equip young people
0:03:51 > 0:03:56with the information they need to make this vital choice.
0:03:56 > 0:03:59If you've got any questions after you've read it, any things
0:03:59 > 0:04:02you're not sure about and you want to ask me, just give me a call.
0:04:02 > 0:04:05Grab the other end. Here's a peg.
0:04:05 > 0:04:07Matt was 19 when he was tested for Huntington's disease.
0:04:07 > 0:04:11He had to wait two weeks for his results.
0:04:11 > 0:04:15You just want a positive outcome. You want it to be the right news.
0:04:15 > 0:04:17It was a very long two weeks.
0:04:19 > 0:04:24Living with Huntington's disease can be a huge struggle.
0:04:24 > 0:04:2750-year-old Richard lives by himself in Birmingham.
0:04:27 > 0:04:30He tested positive for the faulty gene at the age of 30.
0:04:30 > 0:04:33Last year, Richard was forced to give up his job as a shop assistant
0:04:33 > 0:04:36and take early retirement.
0:04:36 > 0:04:38He now experiences mood swings, jerky body movements
0:04:38 > 0:04:40and speech difficulties.
0:04:40 > 0:04:47Well, my speech is... I think it's getting more...
0:04:47 > 0:04:50for people to understand, it takes me
0:04:50 > 0:04:55a little bit more to actually say words correctly out of my mouth.
0:04:55 > 0:04:59I've got more jerks and more twitches and my movements walking.
0:05:01 > 0:05:04The charity is there to help people like Richard
0:05:04 > 0:05:06who are living with the disease.
0:05:06 > 0:05:08Hello there, Jackie.
0:05:08 > 0:05:10Hi, how are you?
0:05:10 > 0:05:13It has 20 specialist care advisors, like Jackie, who visit sufferers
0:05:13 > 0:05:16and their families at home to offer practical and emotional support.
0:05:16 > 0:05:20If speech therapy was going to be helpful, would you want
0:05:20 > 0:05:22a bit of help about that?
0:05:24 > 0:05:29Well, yes, I think I might have it but at the moment
0:05:29 > 0:05:32I don't think my speech is... that I really need it.
0:05:32 > 0:05:36Jackie has been visiting Richard since his symptoms began.
0:05:36 > 0:05:40I think the world would be very frightening
0:05:40 > 0:05:43if this charity wasn't there.
0:05:43 > 0:05:48Is that the one that he won last year? Is it the Carling one?
0:05:48 > 0:05:50Yeah, McLeish is manager now.
0:05:50 > 0:05:53Despite always wanting a family of his own, Richard made
0:05:53 > 0:05:58the decision not to have children for fear of passing the disease on.
0:05:58 > 0:06:02He now has four godchildren, including 16-year-old Ben.
0:06:02 > 0:06:06I have to take every year as it comes.
0:06:06 > 0:06:09I'm just very grateful for each year.
0:06:09 > 0:06:13Having watched his father battle with the disease,
0:06:13 > 0:06:16Matt had decided to be tested for the faulty gene.
0:06:16 > 0:06:20Two weeks later, Matt and his mum went to collect his results.
0:06:20 > 0:06:22The genetic nurse opened up the envelope
0:06:22 > 0:06:25and said, "I'm really sorry." I just broke down,
0:06:25 > 0:06:29because I knew then that it was bad news.
0:06:29 > 0:06:31Er, it's the worst thing in the world
0:06:31 > 0:06:35to hear that you've passed something like this on to your son.
0:06:37 > 0:06:38So it was awful.
0:06:40 > 0:06:47After you've had your results, it's really quite a surreal experience.
0:06:49 > 0:06:51Your whole life had just changed at that point
0:06:51 > 0:06:55and it's almost too much to comprehend.
0:06:57 > 0:07:00People who test positive for Huntington's disease
0:07:00 > 0:07:02have to live with the prospect that, while healthy now,
0:07:02 > 0:07:07at some point in their future the first symptoms will appear.
0:07:07 > 0:07:09This can be an enormous weight to bear.
0:07:09 > 0:07:12The charity is there to help people cope with this burden
0:07:12 > 0:07:15and prepare them for what lies ahead.
0:07:15 > 0:07:18It runs support groups which give sufferers
0:07:18 > 0:07:21and their families a place to share their experiences.
0:07:21 > 0:07:24Just discussing it with people
0:07:24 > 0:07:27and having that support, being able to talk with people
0:07:27 > 0:07:30that have also tested positive, it gives you great insight.
0:07:30 > 0:07:34Four years after he tested positive for the faulty gene,
0:07:34 > 0:07:3823-year-old Matt is determined to live life to the full.
0:07:38 > 0:07:41This year he is running 15 marathons around the world
0:07:41 > 0:07:43to raise money for the HDA.
0:07:43 > 0:07:46You can't avoid thinking about Huntington's disease.
0:07:46 > 0:07:48It's certainly on my mind every day.
0:07:48 > 0:07:54I know that at some point I will have symptoms. I'll be needing
0:07:54 > 0:07:57a lot of the support that the HDA's providing
0:07:57 > 0:08:01and I know that I can trust them to provide that support.
0:08:01 > 0:08:05With your help, the Huntington's Disease Association can provide
0:08:05 > 0:08:08the specialist care that sufferers and their families
0:08:08 > 0:08:10so desperately need.
0:08:10 > 0:08:12So please donate online.
0:08:16 > 0:08:19If you haven't got access to the internet or a computer,
0:08:19 > 0:08:20please give us a call.
0:08:24 > 0:08:28If the lines are busy, please, please, please keep trying.
0:08:28 > 0:08:30Calls are free from most landlines.
0:08:30 > 0:08:33Some networks and mobile operators will charge for these calls.
0:08:33 > 0:08:37If you'd like to post a donation, please make your cheques payable
0:08:37 > 0:08:39to Huntington's Disease Association
0:08:39 > 0:08:40and send it to...
0:08:42 > 0:08:44Remember, if you're a UK tax payer,
0:08:44 > 0:08:48the charity can collect Gift Aid on your donation, worth another 25%.
0:08:48 > 0:08:51Just send in a note to say you want your donation to be subject to
0:08:51 > 0:08:54Gift Aid, and include the date, your full name and address.
0:08:54 > 0:08:56Thank you.