Latest news with #VoicesforHope
The Star
3 days ago
- Health
- The Star
Making known a rare disease
One for the album: Individuals living with PWS, together with their caregivers and other participants. To foster greater understanding of Prader-Willi Syndrome (PWS) and support those affected, students from the Diploma in Communication (DICM) programme at Taylor's College recently organised Voices for Hope, a campaign dedicated to raising awareness of PWS and funds for the Prader-Willi Syndrome Association Malaysia (PWSA Malaysia). During the event held on June 11, participants had the opportunity to engage directly with individuals living with PWS and their caregivers, gaining valuable firsthand insights into the challenges and resilience within the community. Collective effort: Azhar (centre) posing for a photo with DICM students during the event. Organised in collaboration with PWSA Malaysia and in conjunction with DICM's 25th anniversary celebration, the initiative reflected how 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. Members 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 about the realities of living with PWS. Group leader Qreena Tee Qi Jiun, a second-year DICM student, said she was honoured to organise an event that could make a meaningful difference for a rare disease and its community. 'The real learning is not just about gaining knowledge from books – it is also about sharing humanity, empathy and understanding to spread awareness to people around us. 'Although the effort might be small like a flame, it can still light up the entire path in the dark. A small spark lights up the dark; a small cause lights up the future,' she said in a press release. PWSA president Azhar Talib said 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,' he said. 'Voices for Hope' AMONG the campaign participants were devoted caregivers who shared their personal journeys of raising sons with PWS, highlighting both the daily realities and the importance of community support in navigating life with this rare disorder. Beyond the medical and financial hurdles, social challenges weigh heavily on these families. Yet, amid all the hardship, these parents hold on to moments of joy. Here's what they shared: 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. It is very frustrating for us caregivers because we are not able to get the right care when the condition is not recognised or understood. Sometimes when people see a hungry child, their instinct is to offer food. 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 him; we are protecting him. 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 My son Nagheendran, now 26 years old, was misdiagnosed before finally receiving a proper diagnosis at the age of four. His experience highlights the delays that can occur when awareness is lacking, often leading to missed opportunities for early intervention and critical treatment. Maheswarie Subramaniam Ken's diagnosis brought about significant lifestyle changes to the family. I learnt to cook healthier meals tailored to his needs and, at times, the family eats separately to help manage his portions while ensuring he still receives proper nutrition. Lantz Yap
Straits Times
11-08-2025
- Business
- Straits Times
Forum: Concerns about status of dementia in national disability agenda
Sign up now: Get ST's newsletters delivered to your inbox I am part of a caregiver group from Dementia Singapore's Voices for Hope initiative and would like to raise some questions regarding the status of dementia within Singapore's national disability policy framework. As Singapore faces a rapidly ageing population, the number of individuals diagnosed with dementia continues to rise. As a degenerative brain condition, dementia often results in significant cognitive and functional decline, severely impacting a person's ability to perform daily activities and live independently. However, based on a review of the Enabling Masterplan 2030, there appears to be no explicit mention of dementia, including young-onset dementia, as a recognised disability. This omission raises concerns about how consistently people with dementia are included within our national disability agenda. For example, some of our members were advised that their loved ones living with dementia do not qualify for the Persons with Disabilities Concession Card – raising concerns about practical recognition and inclusion. In another case, a person living with dementia was nominated for a national-level award recognising individuals with disabilities. However, the nomination was not accepted – reportedly because dementia is not considered a qualifying disability. Top stories Swipe. Select. Stay informed. World Trump seizes control of Washington police, deploys National Guard Business Lower-wage retail workers to receive up to 6% pay bump from Sept 1 Singapore Keppel to sell M1's telco business to Simba for $1.43b, says deal expected to benefit consumers Singapore ST Explains: Who owns Simba, the company that is buying M1? Singapore Telco price undercutting expected to subside after sale of M1 to Simba: Analysts Singapore ST Explains: What is Vers and which HDB estates could it be rolled out in? Singapore For Vers to work, compensation should account for varied needs of HDB flat owners: Observers Singapore At least $2m lost in S'pore to govt official impersonation scams involving cryptocurrency in Q1 This has led to confusion and concern within our community about the practical interpretation of who qualifies as a person with disability in Singapore. I would like to ask: What are the criteria used to determine what qualifies as a disability under national policy? Are there plans to formally review this gap in recognition of, and to better align disability policies with, the realities of cognitive and mental decline faced by people with dementia? I hope the relevant agencies and the wider public will re-examine how we define and support disability in Singapore, especially as we strive towards a more inclusive society. Wong Loke Kit
Sinar Daily
09-08-2025
- Health
- Sinar Daily
When hunger doesn't stop: Raising awareness on Prader-Willi syndrome in Malaysia
In most homes, a child asking for second helpings at dinner is met with encouragement or teasing. But for some families, constant hunger is not just a phase, it is a warning sign of something far more complex. Beneath the surface of seemingly insatiable appetites lies a rare and often misunderstood condition that affects not only the body but the rhythm of daily life: Prader-Willi Syndrome (PWS). It is easy to overlook, a child with a hearty appetite is usually considered healthy, even growing. But in cases of PWS, hunger never turns off. Known medically as hyperphagia, this constant urge to eat is a primary symptom of the rare genetic disorder that affects approximately 1 in 15,000 births. If left unmanaged, the condition can lead to life-threatening complications including obesity, diabetes, high blood pressure and heart disease. In Malaysia, where awareness of rare diseases remains limited, most cases go undiagnosed or misidentified. According to PWSA Malaysia, only 199 cases have been identified — a number that suggests countless others are living without proper diagnosis or support. There is no cure for PWS, but early and consistent treatment can improve outcomes. One key intervention is Human Growth Hormone (HGH) therapy, which helps build muscle strength and supports physical growth. Unfortunately, in Malaysia, this treatment is not subsidised under rare disease coverage, making it financially out of reach for many. Only 15 per cent of families registered under PWSA Malaysia can afford the HGH treatment. For the remaining majority, the uphill battle continues. Not just against symptoms, but against a system that does not yet recognise their needs. Azhar (middle), with a group of Taylor's College Diploma in Communication programme students running the event to raise awareness and foster greater understanding of PWS. To amplify awareness and raise funds, students from the Diploma in Communication (DICM) programme at Taylor's College recently organised Voices for Hope, a campaign dedicated to supporting PWSA Malaysia. Held in conjunction with the programme's 25th anniversary, the event showcased the power of youth-led advocacy and empathy in real-world issues. Qreena Tee Qi Jiun, a second-year DICM student and campaign leader, said that the real learning is not just about gaining knowledge from books, it is also about sharing humanity, empathy and understanding to spread awareness to people 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,' she said. Through inclusive games like pickleball and sensory simulations, the event allowed participants to better understand the sensory and social experiences of those living with PWS. It also created space for meaningful conversations between the public and members of the PWS community such as caregivers, advocates and individuals alike. At the heart of the campaign were the voices of caregivers, parents who live each day navigating the challenges of PWS with resilience and grace. Azman Ahmad Bakri, father to a child with PWS, spoke candidly about the challenges in securing proper medical care: '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. 'It is very frustrating for us caregivers because we are not able to get the right care when the condition is not recognised or understood,' he said. Maheswarie Subramaniam recalled that her son, Nagheendran, now 26, was misdiagnosed until he was four years old, a delay that cost precious time for early intervention. Her story is a stark reminder of the importance of timely diagnosis and systemic awareness. For Lantz Yap, father to Ken, the diagnosis brought an immediate shift in family dynamics and routine. He now prepares meals tailored specifically to Ken's dietary needs and often eats separately to avoid triggering hunger or emotional stress. 'Sometimes when people see a hungry child, their instinct is to offer food. 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 him; we are protecting him,' he said. President of PWSA Malaysia, Azhar Talib, acknowledged that while local awareness remains low, Malaysia is gradually stepping into global discussions around research and advocacy. '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,' he mentioned. PWSA Malaysia has also launched online resources to support families. Their website offers guidance across life stages, from dietary management to education planning and emotional care — acting as a lifeline for parents searching for direction. Looking ahead, the association's five-year goal includes advocating for government support and subsidies for daily HGH treatment, bringing hope to families that financial relief and better care may someday become a reality.
Rakyat Post
08-08-2025
- 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.
