Latest news with #Prader-WilliSyndrome
Rakyat Post
4 hours ago
- Health
- Rakyat Post
This Rare Genetic Disorder Makes You Feel Hungry ALL The Time
Subscribe to our FREE When children ask for more food, adults often respond in one of two ways: by telling them to stop eating so much or by encouraging them to eat more because they're growing. However, persistent hunger may point to a deeper underlying issue. Some children experience an insatiable appetite, also known as hyperphagia, a symptom of the Prader-Willi Syndrome (PWS), which is a rare genetic disorder in Malaysia. If left unmanaged, this condition can lead to chronic overeating, significantly increasing the risk of obesity and serious health complications such as diabetes, high blood pressure, and heart disease. (jcomp/freepik) The prevalence of PWS is about To date, only 199 cases have been identified through the Prader-Willi Syndrome Association, Malaysia (PWSA Malaysia), signifying the likelihood that many more individuals are living with the disorder without proper support, care, and community. While there is no cure for PWS, certain treatments can help manage its symptoms. One of the most important is Human Growth Hormone (HGH) treatment, which improves muscle strength and supports physical growth. However, the cost of this treatment is very high. (pressfoto/freepik) As a rare disease, PWS currently receives no support for the HGH treatment in Malaysia, and as a result, only 15% of families within PWSA Malaysia can afford it for their children. To raise awareness and foster greater understanding of PWS, students from the Diploma in Communication (DICM) programme at Taylor's College organised Voices for Hope, a meaningful campaign dedicated to raising awareness for PWS and funds for PWSA Malaysia. The event was held in collaboration with PWSA Malaysia and in conjunction with DICM's 25th anniversary celebration, reflecting how the use of communication can spark real-world impact and awareness. The event featured a range of interactive experiences designed to build understanding and connection between the public and the PWS community. Individuals of the PWS community had the opportunity to experience an inclusive game of pickleball, reinforcing the message that everyone deserves to be seen, included and supported. DICM students also prepared a sensory simulation experience with myth-busting games to shift perspectives and spark curiosity through engagement about the realities of living with PWS. Group leader Qreena Tee Qi Jiun, a second-year student of the DICM programme, was honoured to be organising an event that could make a meaningful difference for a rare disease and its community. She said that true learning goes beyond what's written in books — it's about sharing humanity, empathy, and understanding to raise awareness among those around us. Although the effort might be like a flame, it is always enough to light up the entire path in the dark. A small spark lights up the dark, a small cause lights up the future. Qreena Tee Qi Jiun. Participants of Voices for Hope had the opportunity to engage directly with individuals living with PWS and their caregivers, offering valuable, firsthand insights into the challenges and resilience within the community. Among them were three devoted caregivers who shared their journeys of raising sons with PWS, highlighting both the daily realities and the importance of community support in navigating life with this rare disorder. For Azman Ahmad Bakri, one of the greatest struggles is the low awareness about PWS, even among medical professionals. We have tried applying through the normal channels, but not a lot of doctors are well-equipped in handling PWS cases, and there are also instances where they are not very familiar with what PWS is. Azman Ahmad Bakri. He explains that caregivers face significant frustration when the disease is not recognised or understood, as this prevents patients from accessing the proper care needed. Beyond the medical and financial hurdles, social challenges weigh heavily on these families. 'Sometimes when people see a hungry child, their instinct is to offer food,' Azman explained. But for our children, that can be dangerous. There were times when people criticised us for limiting his food intake. The truth is, we are not restricting them we are protecting them. Azman Ahmad Bakri. This sentiment was echoed by Lantz Yap, another caregiver who faces similar challenges in seeking medical support. Lantz Yap shared that the diagnosis brought about significant lifestyle changes to the family when his son, Ken, was diagnosed. He learned to cook healthier meals tailored to his son's needs and, at times, the family eats separately to help manage Ken's portions while ensuring he still receives proper nutrition. Maheswarie Subramaniam shared that her son, Nagheendran, now 26 years old, was misdiagnosed before finally receiving a proper diagnosis at the age of four. Their experience highlights the delays that can occur when awareness is lacking, often leading to missed opportunities for early intervention and critical treatment. Yet, amid all the hardship, these parents hold on to moments of joy. Every smile, every laugh, every tear—those are the moments I treasure with my son, Mike. Some days, the little things feel like a big win. We keep going because we must. Azman Ahmad Bakri. Azhar Talib, President of the Prader-Willi Syndrome Association Malaysia, shared that Malaysia is now taking an active role in the global PWS community. It is encouraging to see promising research happening in areas like gene therapy and hunger control. We may not have a cure yet, but there is real progress, and Malaysia is now part of that global conversation. Prader-Willi Syndrome Association Malaysia President Azhar Talib. PWSA Malaysia's long-term goal is to secure better access and subsidies for daily HGH treatment within the next five years. The association's website also offers resources and guidelines on education, diet, and emotional care for children with PWS, giving families essential support. Share your thoughts with us via TRP's . Get more stories like this to your inbox by signing up for our newsletter.
Scottish Sun
6 hours ago
- Entertainment
- Scottish Sun
Katie Price reveals how much weight Harvey has lost just a week after he moved to new home
Click to share on X/Twitter (Opens in new window) Click to share on Facebook (Opens in new window) KATIE Price has revealed how much weight her son Harvey has lost just a week after he moved to a new home. Former glamour model Katie, 46, is a doting mum to her son Harvey, 23 - who lives with ADHD, autism, genetic condition Prader-Willi Syndrome and septo-optic dysplasia. Sign up for the Entertainment newsletter Sign up 4 Katie Price has revealed how much weight Harvey has lost Credit: Getty 4 He moved to a new home last week Credit: Paul Edwards 4 Katie is a doting mother to her eldest son Harvey Credit: PA Just last week, Harvey moved to a new home in Southampton, with his mum fighting back tears as she dropped him off. And since his move, Katie has revealed how much weight he has lost. This comes after she revealed Harvey would be starting on the weight loss jab, Mounjaro, once he got to his new college. Speaking on her podcast this week, The Katie Price Show, she could be heard chatting about Harvey to her sister Sophie. "So when we got off the boat, we went and saw Harvey," she said midway through the new instalment. Katie then revealed how much weight Harvey has lost, leaving her sister stunned. "He's lost 8lbs. It's good," she told her sister. Sophie was shocked and swooned over how good it was that he had lost such a substantial amount. When Harvey left his school earlier this summer, Katie was overcome with emotion when it hit her that she would miss her son when he went to his new home. "I kept it in but I felt my lip go, because that's it - no more college. Katie Price reaches out to Harvey's lookalike half-brother to arrange first meeting after dad Dwight Yorke's snub "And then they were all crying there because they're going to miss him," she said while recalling his leavers' assembly. Recalling the moment she dropped Harvey off at his new home, she continued: 'I took him to his place in Southampton, he was so excited. 'And then at half four this morning, he took a screen shot of outside of his window and it was obviously still dark. 'He drew loads of stars and a moon, and a picture of me with a big heart and then [Katie's boyfriend] JJ looked like a little twig man next to me. "He always does JJ small and me big.' But, despite Harvey's excitement about his new chapter, Katie confessed her son was emotional about the change. She added: "I FaceTimed him just before I got my lashes done and he was in bed crying. "I went, 'What are you crying for?' "He said: 'Because I miss you'. So I said, 'Are you happy there?' and he went, 'Yes'.' Katie is also mum to Junior, 20, and Princess, 18, from her marriage to Peter Andre, and Jett, 11, and Bunny, 10, who she shares with third husband Kieran Hayler.
Scottish Sun
31-07-2025
- Entertainment
- Scottish Sun
Emotional Katie Price reveals Harvey was in tears on the phone after she dropped him off at new home
Click to share on X/Twitter (Opens in new window) Click to share on Facebook (Opens in new window) KATIE Price has opened up about an emotional week after eldest son Harvey finished college and moved to his new home in Southampton. Proud mum Katie, 46, revealed she fought back tears as Harvey, 23 - who lives with ADHD, autism, genetic condition Prader-Willi Syndrome and septo-optic dysplasia - spoke on stage at his school on his final day. 4 Katie opened up about Harvey's emotional last day at college Credit: Channel 4 4 The proud mum admitted Harvey was emotional despite his excitement about his new chapter Credit: GC Images 4 Katie told how she fought back tears when Harvey took to the stage on his last day Credit: Getty Recalling the bittersweet moment on the latest episode of her podcast The Katie Price Show, which she co-hosts with sister Sophie, 35, the former glamour model said: 'I've had a busy week with the kids. Harvey had his leavers' on Friday. 'You'll see on my YouTube, I filmed getting the van, filling the van up and getting there. 'I talked to Harvey about how he was feeling about it all. I filmed me taking him [to his new place] yesterday. They gave me all of his work and certificates, they put it all in a book with photos from all the years he's been there. 'When he went on stage, with them saying how good he's been and all of that, I was like, 'don't cry, don't cry'. "I kept it in but I felt my lip go, because that's it - no more college. And then they were all crying there because they're going to miss him.' Katie is also mum to Junior, 20, and Princess, 18, from her marriage to Peter Andre, and Jett, 11, and Bunny, 10, who she shares with third husband Kieran Hayler. Recalling the moment she dropped Harvey off at his new home, she continued: 'I took him to his place in Southampton, he was so excited. 'And then at half four this morning, he took a screen shot of outside of his window and it was obviously still dark. 'He drew loads of stars and a moon, and a picture of me with a big heart and then [Katie's boyfriend] JJ looked like a little twig man next to me. He always does JJ small and me big.' But, despite Harvey's excitement about his new chapter, Katie confessed her son was emotional about the change. Princess Andre hits back at money-shaming trolls who claim 'Peter and Katie Price bought her £10k motor as first car' She added: 'I FaceTimed him just before I got my lashes done and he was in bed crying. 'I went, 'What are you crying for?' He said, 'Because I miss you'. So I said, 'Are you happy there?' And he went, 'Yes'.' Meanwhile, it's also been a huge week for Princess after she landed at number two on high society fashion magazine Tatler's annual best dress list. The rising star - who earlier this year announced her very own reality show - beat the likes of royal Zara Tindall, who came in seventh place. Tatler's Style Editor Chandler Tregaskes said of Princess: "At just 18, the world is her oyster, and with her babydoll eyes, blonde beachy waves down to her hips and wardrobe of Y2K revival hits, this Princess is ready for her crown."
The Irish Sun
23-07-2025
- Entertainment
- The Irish Sun
Emotional Katie Price drops son Harvey off at new home after he's booted out of college for being ‘too difficult'
KATIE Price was left emotional as she dropped son Harvey off to his new home after being "kicked out" of his £350k a year college. Harvey, 22, was born with ADHD , autism , genetic condition Prader-Willi Syndrome, and septo-optic dysplasia, which causes blindness. 3 Katie Price gave fans an update on her son Harvey's new home Credit: Getty 3 The former glamour model drove Harvey to Southampton on Tuesday Credit: PA Earlier this month, former glamour model In a new clip, Katie filmed herself and Harvey in the car on a road trip to Southampton as she drove him to his new home. Katie said: "I'm back in the van, we're going to your new place until October. Are you excited?" Harvey replied: "Yes." Speaking to the camera, Katie said: "I'm on my way to take Harvey to his next place after college. "We've got about an hour and 20 drive and I don't know how I'm going to feel leaving him there." She then turned to her son and said: "I hate leaving you there Harv." Most read in Showbiz Harvey replied: "It's s*** innit mum," which promoted the TV star to giggle and say: "Stop making me laugh." She reassured him: "I'm going to come and see you on Saturday." Katie Price reveals son Harvey now weighs 30st as she gives update on his fat jabs and says 'I can't wait to see what he looks like' Speaking to her fans again, she said: "So there you go. I'll let you know how I feel when I've dropped him off." She then put her face in her hands and said nervously: "Oh I don't like these days at all but he's 23 and he's got to go to residential now." The mum-of-five captioned the clip: "Love Harvey's positivity today." He gave the camera a thumbs up and said: "I love you mum." The night before Katie shared a clip of her cuddling Harvey in bed before their road trip to Southampton. Her decision for Harvey to go back to collage comes after she revealed that her 23-year-old son Harvey weight around 30st as a result of his many complex needs, including Prader-Willi syndrome, but Katie hopes the use of weight-loss drug Mounjaro will keep it under control. Speaking on her podcast with sister and co-host Sophie Price, Katie said: "Hopefully Harvey starts his Mounjaro this week, but we'll talk about that next week and I'll go through all of what's happening about that." The TV personality's eldest child has Prader-Willi syndrome, which sparks a constant desire to eat food and a permanent feeling of hunger which leads to obesity. Harvey battles a series of debilitating conditions including autism, septo-optic dysplasia, ADHD and oppositional defiant disorder. In a video posted in April, 'I just googled it in stones, 188kg is just a few kg of being 30 stone. 'It's so life-threatening now, I'm still waiting for the doctors to get back to me starting on the mounjaro and his journey to a healthy life.' Read more on the Irish Sun She continued: 'It's so sad his quality of life at the moment where he's so big, he just can't really do much." Katie is also mum to Junior and Princess Andre as well as Jett and Bunny Hayler. Katie Price's relationship history We take a look back at the highs and lows of Katie Price's relationship history. 1996-1998: Katie got engaged to Gladiators star Warren Furman - aka Ace - with a £3,000 ring. But their relationship didn't make it as far as 'I do'. 1998-2000: Katie described Dane Bowers as 'the love of her life' but she broke up with the singer when he allegedly cheated on her. 2001: Footballer Dwight Yorke is the father of Katie's eldest child Harvey. He has had very little to do with Harvey throughout his life. 2002: Rebounding from Dwight, Katie famously had one night of passion with Pop Idol star Gareth Gates, allegedly taking his virginity. 2002-2004: Katie was dating Scott Sullivan when she entered the jungle for I'm A Me Out Of Here!. He threatened to "punch Peter's lights out" when chemistry blossomed between her and Peter Andre. 2004-2009: The jungle romance resulted in Katie marrying Aussie pop star Peter. They had two kids, Junior and Princess, before their bitter split in 2009. 2010-2011: Fresh from her break-up with Peter, Katie enjoyed a whirlwind relationship and marriage with cage fighter Alex Reid. They split 20 months after their Las Vegas wedding. 2011: Katie briefly dated model Danny Cipriani... but it ended as quickly as it begun. 2011-2012: They didn't speak the same language, but Katie got engaged to Argentinian model Leandro Penna in 2011. He later fled home to South America. 2012-2018: Wedding bells rang once more after Katie met Kieran Hayler in 2013. They had two kids together, Jett and Bunny, before their break-up and divorce. 2018-2019: Katie moved on quickly with Kris Boyson. They had an on-off romance for one year and even got engaged. They split for good in 2019. 2019: Katie was linked to Charles Drury during her on-off relationship with Kris. Charles, who also dated Lauren Goodger, has always denied being in "official relationship" with her. 2020-2023: Car salesman Carl Woods took a shining to Katie in 2020. Their relationship was up and down for three years. They broke up for a final time last year. 2024-present: After weeks of rumours, Katie confirmed her relationship with Married At First Sight star JJ Slater in February this year. 3 Harvey was 'kicked out' of his £350k a year college Credit: Getty
Scottish Sun
23-07-2025
- Entertainment
- Scottish Sun
Emotional Katie Price drops son Harvey off at new home after he's booted out of college for being ‘too difficult'
Click to share on X/Twitter (Opens in new window) Click to share on Facebook (Opens in new window) KATIE Price was left emotional as she dropped son Harvey off to his new home after being "kicked out" of his £350k a year college. Harvey, 22, was born with ADHD, autism, genetic condition Prader-Willi Syndrome, and septo-optic dysplasia, which causes blindness. Sign up for the Entertainment newsletter Sign up 3 Katie Price gave fans an update on her son Harvey's new home Credit: Getty 3 The former glamour model drove Harvey to Southampton on Tuesday Credit: PA He was previously accepted into a residential college, but in February Harvey was kicked out for being "too difficult". Earlier this month, former glamour model Katie, 47, revealed Harvey would be leaving college and going into independent living. In a new clip, Katie filmed herself and Harvey in the car on a road trip to Southampton as she drove him to his new home. Katie said: "I'm back in the van, we're going to your new place until October. Are you excited?" Harvey replied: "Yes." Speaking to the camera, Katie said: "I'm on my way to take Harvey to his next place after college. "We've got about an hour and 20 drive and I don't know how I'm going to feel leaving him there." She then turned to her son and said: "I hate leaving you there Harv." Harvey replied: "It's s*** innit mum," which promoted the TV star to giggle and say: "Stop making me laugh." She reassured him: "I'm going to come and see you on Saturday." Katie Price reveals son Harvey now weighs 30st as she gives update on his fat jabs and says 'I can't wait to see what he looks like' Speaking to her fans again, she said: "So there you go. I'll let you know how I feel when I've dropped him off." She then put her face in her hands and said nervously: "Oh I don't like these days at all but he's 23 and he's got to go to residential now." The mum-of-five captioned the clip: "Love Harvey's positivity today." He gave the camera a thumbs up and said: "I love you mum." The night before Katie shared a clip of her cuddling Harvey in bed before their road trip to Southampton. Her decision for Harvey to go back to collage comes after she revealed that her 23-year-old son was due to start weight loss injections in order to control his ballooning weight. Harvey weight around 30st as a result of his many complex needs, including Prader-Willi syndrome, but Katie hopes the use of weight-loss drug Mounjaro will keep it under control. Speaking on her podcast with sister and co-host Sophie Price, Katie said: "Hopefully Harvey starts his Mounjaro this week, but we'll talk about that next week and I'll go through all of what's happening about that." The TV personality's eldest child has Prader-Willi syndrome, which sparks a constant desire to eat food and a permanent feeling of hunger which leads to obesity. Harvey battles a series of debilitating conditions including autism, septo-optic dysplasia, ADHD and oppositional defiant disorder. In a video posted in April, Katie revealed: 'I'm so heartbroken and gutted that his weight is just going up. 'I just googled it in stones, 188kg is just a few kg of being 30 stone. 'It's so life-threatening now, I'm still waiting for the doctors to get back to me starting on the mounjaro and his journey to a healthy life.' She continued: 'It's so sad his quality of life at the moment where he's so big, he just can't really do much." Katie is also mum to Junior and Princess Andre as well as Jett and Bunny Hayler. Katie Price's relationship history We take a look back at the highs and lows of Katie Price's relationship history. 1996-1998: Katie got engaged to Gladiators star Warren Furman - aka Ace - with a £3,000 ring. But their relationship didn't make it as far as 'I do'. 1998-2000: Katie described Dane Bowers as 'the love of her life' but she broke up with the singer when he allegedly cheated on her. 2001: Footballer Dwight Yorke is the father of Katie's eldest child Harvey. He has had very little to do with Harvey throughout his life. 2002: Rebounding from Dwight, Katie famously had one night of passion with Pop Idol star Gareth Gates, allegedly taking his virginity. 2002-2004: Katie was dating Scott Sullivan when she entered the jungle for I'm A Me Out Of Here!. He threatened to "punch Peter's lights out" when chemistry blossomed between her and Peter Andre. 2004-2009: The jungle romance resulted in Katie marrying Aussie pop star Peter. They had two kids, Junior and Princess, before their bitter split in 2009. 2010-2011: Fresh from her break-up with Peter, Katie enjoyed a whirlwind relationship and marriage with cage fighter Alex Reid. They split 20 months after their Las Vegas wedding. 2011: Katie briefly dated model Danny Cipriani... but it ended as quickly as it begun. 2011-2012: They didn't speak the same language, but Katie got engaged to Argentinian model Leandro Penna in 2011. He later fled home to South America. 2012-2018: Wedding bells rang once more after Katie met Kieran Hayler in 2013. They had two kids together, Jett and Bunny, before their break-up and divorce. 2018-2019: Katie moved on quickly with Kris Boyson. They had an on-off romance for one year and even got engaged. They split for good in 2019. 2019: Katie was linked to Charles Drury during her on-off relationship with Kris. Charles, who also dated Lauren Goodger, has always denied being in "official relationship" with her. 2020-2023: Car salesman Carl Woods took a shining to Katie in 2020. Their relationship was up and down for three years. They broke up for a final time last year. 2024-present: After weeks of rumours, Katie confirmed her relationship with Married At First Sight star JJ Slater in February this year.
