Down's syndrome: New research launched by Ulster University
James Martin said it is important people take part."I have two of my friends who would have health problems and they have Down's syndrome too," James told BBC News NI. "I don't really have a heart problem myself. And it's nice to see what their experience of life is."James is an honorary Ulster University graduate and said it was important that young people with Down's syndrome continued to be listened to and supported."I found my thing was drama. I'm an actor," he said."Yes I've an honorary doctorate and an MBE so all that is really nice, but if it wasn't for these charities in lockdown and during Covid we'd be snookered."So, its going to be nice to know what it's going to be like in the next 15 years."
The university said more than 1,450 people were born with the genetic condition between 1990 and 2023 in Northern Ireland.The project will examine the health, wellbeing and development of children, young people, and adults in Northern Ireland with Down's syndrome.It will engage directly with people with Down's syndrome, their families and carers, to address current deficits in provision.Professor Frank Casey, who is leading the research, said there was a need to further improve antenatal detection of Down's syndrome and examine the lack of co-ordination between the services that provide care for people.It would look at access to suitable educational and employment opportunities.
Ivan Martin, the well known broadcaster who is the father of James, said there are challenges with children "of any type of personality"."Everybody has their challenges. We got our shock in the delivery room when this wee fella arrived 33 years ago and here he is and he had Down's syndrome," Mr Martin said."From day one we decided that anything he wanted to do, we would let him try it."His son tried football, rugby, taekwondo and gymnastics but he really loved acting.
James' mother, Professor Suzanne Martin, said there were "a lot of tears along the way" as James visited hospitals and social workers, particularly when he was very young."School is difficult as well. All of that statementing process is very difficult so there are, what we would refer to as transition times, and at each transition time you are faced with a lot of decisions and a lot of trauma in some ways because it's not an easy path," Prof Martin said.However she said the change brought in by the 1987 Education Act which offered children the opportunity to go to school was clear to see."I think the measure of the impact of that is so clear in the life of James and his friends, most of whom are in gainful employment, some of whom live on their own, and that's in one generation," Prof Martin added."Frank and his team working in this way is fantastic, and supported by the Department of Heath to do this is really good to see."
Hashtags
Try Our AI Features
Explore what Daily8 AI can do for you:
Comments
No comments yet...
Related Articles
BBC News
2 days ago
- BBC News
'My dad started spying on my mum' - the drugs causing sexual urges
When "Sarah" climbed up into the attic of her father's house - she was completely unprepared for what she would father, "James", was a modest man who worked most of his life for the same company. He retired about 20 years ago when he was diagnosed with Parkinson' had managed the tremors and balance difficulties caused by the disorder by taking a prescription drug called during the Covid-19 pandemic, Sarah had grown increasingly alarmed about her father's secrecy and wanted to see what he had been spending his time the loft, she discovered reams of handwritten notes and a dozen recording devices he had been using to bug his own writing and on tape he had documented innocent sounds his wife had made as she moved around the house, and while she slept, to try to prove she was having an affair. He had also catalogued details of numerous chat lines and porn websites he had been obsessively Sarah told her elderly mother about what she had found, she was horrified to hear that James had also been sexually coercive towards was only when Sarah took him to see his specialist nurse five years ago that she learned the medication her father was on could have such extreme side effects."Oh, he's gone down the randy route, has he?" the nurse couple are now living separately in their old age, because James poses too much of a risk to his wife, says Sarah. James lives in a specialist care home and Sarah says she has been told that he has sexually assaulted staff there."This medication has torn my family apart," says Sarah - whose name we have changed along with her father' has power of attorney for both her parents, including for their medical has carefully weighed their interests in deciding to tell her family's story, she says, but wants people to know about the impact the drugs can have. James's case is one of 50 the BBC has now been contacted about, the majority concerning men being treated for movement disorders whose behaviour changed dramatically after being prescribed medication from a specific family of drugs. Often, behaviour changed after many years of taking the medicines at increasing doses, the men told March, we revealed how women had not been warned by doctors that taking the same type of medication for restless leg syndrome (RLS) could cause them to cruise for sex and gamble compulsively - placing them at personal risk and ruining their finances, careers and of the cases we have now learned of involve the exploitation of women and children. These include: A man who was convicted of child sexual offences after abusing a childAn octogenarian who says he has become addicted to pornography including bestiality and child abuse imagesA father of three children who said the drugs left him needing to have sex up to seven times a day - and caused him to walk out on two marriages when partners could not satisfy him All three men said they had had no previous history of such sexual behaviour before taking the drugs. They also said they felt profound shame about their behaviour but believed the medication helped their men the BBC spoke to said they did not want to take themselves off the drugs because the medication had led them to discover new sexual interests - which are legal and consensual - and because they enjoyed their increased married grandfather in his 60s has begun crossdressing and has entered into online relationships with men. Another man says the drugs disinhibited homosexual feelings he had not previously records show that some of the men we spoke to tried reducing their dosage but all felt it had negatively impacted their Ropinirole that James takes belongs to a family of drugs known as dopamine agonists, which are prescribed for Parkinson's, RLS, pituitary tumours and other risk of impulsive behaviour side effects of dopamine agonist medication have long been known - but the BBC has discovered that doctors are still not warning all patients who have been prescribed the drugs for a variety of conditions. In March we revealed how British drug company GSK had found a link between Ropinirole and what it called "deviant" sexual behaviour - including paedophilia - in told the BBC it had shared these findings with health authorities, included this safety advice in medication leaflets, and conducted extensive trials for the drug which has been prescribed for 17 million warnings about such behaviour were not included in leaflets until 2007 - and, even now, only specify "altered" sexual interest and "excessive" or "increased" libido as advice about the medication's "toxic" side-effects needs to be strengthened immediately because their impact can be "devastating", according to the acting chair of the Health Select Committee, Labour MP Paulette Hamilton."Nine out of 10 people do not read what is on those leaflets," she says."And if you do read it, what does it mean by altered sexual interest? I haven't got a clue." The drugs work by mimicking the effects of dopamine, a natural chemical that helps transmit messages in the brain, such as those governing movement. Dopamine is also known as the "happy hormone" because it is activated when something is pleasurable or we feel agonists can over-stimulate such feelings - helping sufferers of some movement disorders which may be caused by low levels of dopamine. But they can also diminish the appreciation of consequences, leading to impulsive behaviour - according to medication can also actually worsen existing symptoms of restless legs - according to dozens of the people who spoke to the BBC - sometimes causing an uncontrollable urge to move in other parts of the body. This is a well-documented risk for those who take the medication over a prolonged period, and is known as augmentation. If you have more information about this story, you can reach Noel directly and securely through encrypted messaging app Signal on: +44 7809 334720, by email at external or on SecureDrop The BBC has also learned of concerns about two studies that looked at the ability of another dopamine agonist drug - Rotigotine - to tackle such exacerbation of health conditions. Both were sponsored by the drug's manufacturer, Belgian firm have been told that senior officials at the company repeatedly dismissed evidence of augmentation caused by Rotigotine, during the first study in of its authors, Dr Diego Garcia-Borreguero, says UCB staff sat-in on and discussed findings with academics. He says the interference was "subtle", but that the published results were not BBC has also discovered that eight out of nine authors of a second Rotigotine study in 2017 had been paid at some point by UCB - and that five of them were direct company paper's conclusions - that Rotigotine was effective in treating augmentation - are "ridiculous", according to Dr Andy Berkowski, a neurologist who has co-authored clinical practice guidelines for the treatment of RLS in the says data shows that more than 50% of the patients stopped taking the drug during the study largely because of adverse events or a lack of effectiveness - and more than half of those who completed it required an increase in dosage, potentially because of the worsening of their RLS says its studies were unbiased, underwent independent peer review, and that authors who were its employees, or who it had prior affiliations with, fully complied with guidelines on disclosing conflicts of said that Rotigotine's effectiveness was proven in multiple trials and most patients who completed its 2017 study experienced a significant clinical improvement. This corresponds to 37 of the 99 patients who began the study. A list of organisations in the UK offering support and information with some of the issues in this story is available at BBC Action Line. Dopamine agonist drugs were prescribed nearly 1.5 million times by GPs alone in England last year, according to published data seen by the drug, Aripiprazole - a partial dopamine agonist used to treat mental health problems - is also known to cause impulsive behaviours. It was prescribed for more than 1.7 million treatments in England alone last year, often to younger patient taking the drug told us his compulsive gambling had become so bad that he was stealing to fund his habit. The mother of another believes the medication caused her son to expose himself in UK's drug safety regulator, the MHRA, says it has no plans to change its warnings about dopamine agonist previously told the BBC that sexual impulses vary and a general warning about activities which may be harmful is Royal College of GPs said its updated curriculum - which is used to train doctors and will be published next month - will now include the monitoring of impulsive behaviour side effects for RLS, thought to affect between 6% to 17% of patients.A side effect can be considered to be "common" when it affects just 1% of the people who take the medicine, according to health guidance body Department for Health and Social Care did not comment.
ITV News
2 days ago
- ITV News
Nottingham mum 'would probably still be alive today' if ambulance was sent
A mother, who was found dead alongside her disabled daughter at their home in Nottingham, would "probably still be alive today" if an ambulance had been sent to her, a coroner has concluded. The bodies of Alphonsine Djiako Leuga, 47, and Loraine Choulla, 18, were discovered last May at their council home in Radford. It's thought they could have been dead for months. The inquest heard that Ms Leuga had called an ambulance asking for help three months before the pair were found dead. An ambulance was never sent because they thought the call had been abandoned. East Midlands Ambulance Service 's head of patient safety, Susan Jevons, told the inquest there had been a "missed opportunity". Today, coroner Amanda Bewley said: "I am entirely satisfied that had East Midlands Ambulance Service sent an ambulance when she called, Loraine would not have died." She added that she can't say for sure whether Miss Choulla would have survived. Ms Leuga suffered from sickle cell anaemia and died from pneumonia. Miss Choulla had Down's syndrome and learning difficulties and was "entirely dependent" on her mother for food and hydration, Nottingham Coroner's Court was told.
Daily Record
3 days ago
- Daily Record
Veteran broadcaster James Whale shares emotional terminal cancer update as he moves into hospice
James Whale, who has been battling his terminal cancer diagnosis for five years, has now moved into a hospice for end of life care. Veteran broadcaster James Whale has provided an emotional update in his terminal cancer journey after moving into a hospice as he prepares for end of life care. The 74-year-old, who has been battling terminal kidney cancer for five years, was recently told he has just twelve weeks to live. James' cancer has now sadly spread to over 20 tumours in his spine, brain and lungs. The Celebrity Big Brother star, who initially rose to fame in the 1980s as the host of The James Whale Radio Show, moved into a quiet eight-bed hospice near his home in Kent with his wife Nadine Lamont-Brown, earlier this week. James, whose impressive career spans over five decades, first beat kidney cancer in 2000 after being given a 50% chance of survival, but revealed five years ago that the disease had sadly returned. Now into week seven of his life expectancy prognosis, the star has heartbreakingly said: "I'm not me anymore." Speaking on his podcast Tales of the Whales alongside his co-presenter wife Nadine, the pair candidly spoke about James' deteriorating health. The beloved TV personality said he is finding it difficult to breathe, think or talk and added that his hearing is also going downhill. He revealed that his speech has been affected too and that he can be very forgetful while also suffering with the pain of sore pressure sores. During the emotional recording, he told listeners: "I can't breathe, I can't think, I can't talk. "Anyway. Good morning. Welcome to Tales of the Whales, our weekly podcast. I have terminal 5 cancer. Can you get 5?" Join the Daily Record WhatsApp community! Get the latest news sent straight to your messages by joining our WhatsApp community today. You'll receive daily updates on breaking news as well as the top headlines across Scotland. No one will be able to see who is signed up and no one can send messages except the Daily Record team. All you have to do is click here if you're on mobile, select 'Join Community' and you're in! If you're on a desktop, simply scan the QR code above with your phone and click 'Join Community'. We also treat our community members to special offers, promotions, and adverts from us and our partners. If you don't like our community, you can check out any time you like. To leave our community click on the name at the top of your screen and choose 'exit group'. If you're curious, you can read our Privacy Notice. He continued: "Could I thank everybody for getting in touch and wanting to meet up. "I'm not being rude when I make it difficult to get touched up. I mean... in touch." Nadine replied:'You're getting quite tired, so from next week, we're restricting visitors to just very close friends and family." He added: 'The most tiring thing I found… I still can't hear very well, which is more frustrating than anything else. "I've become very slow in my speech and then forgetful and everything else." Talking about his pressure sores, he said: 'I'm tootling along, which is all you can do really, trying to get my breathing sorted and the mark on my bum.' Humble as ever, he asked: "People have to go through a lot worse, don't they? Do they?" James concluded: "Anyway. I don't feel I can go on much more... The other thing is, my energy levels have gone completely. "So I wish everybody well, and let us hope we go through these phases as quickly as we can." The dad-of-two recently celebrated what is thought to be his last birthday, surrounded by his loved ones. The Talk TV host revealed his long-running programme could soon be coming to an end back in May as he reaches the final stages of his cancer battle. As one of the country's most admired radio personalities, James has had a remarkable career. In 2023 he received the first ever TRIC Recognition Award for his outstanding work and last year he was made an OBE for services to broadcasting and charity. He's also helped countless others too, having launched the James Whale Fund for Kidney Cancer in 2006, now known as Kidney Cancer UK, which is the nation's leading specialist charity of its kind.
