Latest news with #HED
Sinar Daily
7 days ago
- Health
- Sinar Daily
Living with HED: Malaysian man battles relentless heat and stigma daily
According to the World Health Organisation, HED is among more than 7,000 rare diseases identified so far and affects about 3.5 to 5.9 per cent of the global population. 15 Jun 2025 09:01am HED patients in Malaysia face even greater challenges due to a lack of medical specialists to manage this incurable condition. This has led to delayed diagnoses, which in turn increases life-threatening risks. - 123RF file photo KUALA LUMPUR - Born with the rare genetic condition Hypohidrotic Ectodermal Dysplasia (HED), Mohamad Syafiq Zulkarnain has grown accustomed to the curious stares he often attracts. While he has come to terms with his distinctive appearance - marked by sparse hair and widely spaced, pointed teeth - these features are not his greatest concern. What troubles him most is the relentless heat he must endure every day. HED is among more than 7,000 rare diseases identified so far and affects about 3.5 to 5.9 per cent of the global population. - Bernama photo "HED prevents my body from producing sweat, which exposes me to the risk of heat stroke if my body temperature exceeds the normal range. So I have to frequently wet my body and avoid staying out in the sun for too long,' the 35-year-old man told Bernama recently. HED is a genetic disorder that affects the development of ectodermal tissues such as skin, hair, teeth and sweat glands. According to the World Health Organisation, HED is among more than 7,000 rare diseases identified so far and affects about 3.5 to 5.9 per cent of the global population. However, HED patients in Malaysia face even greater challenges due to a lack of medical specialists to manage this incurable condition. This has led to delayed diagnoses, which in turn increases life-threatening risks. EARLY DIAGNOSIS Mohamad Syafiq, the eldest of four siblings, said he was fortunate that his mother, who worked in healthcare, recognised early on that something was amiss when he was still a baby. "When I was a baby, my mother and grandmother noticed that I was always fussy in hot weather, crying every night and only calm when I slept shirtless under a fan. "They also noticed I would tire easily in the heat, did not sweat and still had no teeth by the age of two. That was when they began seeking a diagnosis for my condition,' he said, adding that his first tooth only appeared when he was two and a half years old. This early diagnosis allowed his family to take preventive steps, especially during hot weather - measures that ultimately saved his life. "I once lost a fellow HED patient to heat stroke during an outdoor activity. Like me, he couldn't sweat and his body temperature spiked suddenly during a hike,' he said, adding that the incident made him extra cautious. This is why Mohamad Syafiq, who hails from Seri Manjung, Perak doesn't mind the odd looks he gets when he sprays himself with water, even in public. "I always carry a wet towel and a spray bottle wherever I go. The water spray acts as 'artificial sweat' to help cool me down when my body temperature rises,' he explained. His inability to sweat also makes his skin prone to severe dryness and eczema, requiring him to routinely apply moisturising lotion and steroid cream. He also has to be careful about what he eats due to his dental condition. "I can't eat hard foods like nuts or chewy foods. Sometimes my speech is unclear. Many patients need special dentures or implants to overcome this limitation,' he added. STIGMA Recalling his school days, Mohamad Syafiq said that unlike his peers, he couldn't participate in sports and was given "special treatment' - such as being seated in a classroom near the toilets so he could cool down and wet his body more easily. "I rarely joined outdoor or sports activities that lasted long in the sun, due to the risk of heat stroke. Sometimes classmates thought I was the teachers' 'favourite' because of this,' he said. The stigma has followed him into adulthood. Even with a degree, finding a job has been difficult. "I was unemployed for a long time because it was difficult to find a job suited to my condition. I often failed interviews as employers struggled to understand my speech and when I explained my HED, they assumed I wasn't strong or productive enough,' said the holder of a Master of Science in Information Management from Universiti Teknologi MARA, who now works as a freelancer. The stigma isn't limited to the public; it also exists among professionals. "I was once told that my life wasn't 'interesting enough' to be featured in the media because I didn't 'look bad enough',' said Syafiq, who also serves as a coordinator for the HED support group under the Malaysian Rare Disorders Society (MRDS). He added that public awareness of rare genetic diseases, including HED, is very low, with some patients only diagnosed in adulthood - missing the chance for early treatment and support. STRENGTHENING THE TREATMENT SYSTEM Meanwhile, Clinical Geneticist and Pediatric Consultant Dr Tae Sok Kun said one of the biggest challenges for patients with rare genetic diseases like HED is getting an accurate diagnosis early. "I see this delay in getting an accurate diagnosis as a 'diagnostic odyssey' - a long and exhausting journey emotionally, mentally and financially. "Many parents don't realise that symptoms like delayed tooth growth or lack of hair are important signs. They think it's just normal delay and don't seek early treatment,' said the specialist from the University Malaya Medical Centre (UMMC). He added that Malaysia also lacks specialists - currently only around 13 to 15 clinical geneticists nationwide - and the referral system is still unstructured. "In fact, many general doctors themselves don't know where to refer cases like HED, which shows an urgent need to strengthen the referral structure and early exposure to rare diseases in medical training,' he said. "In terms of treatment, HED is a genetic disease with no cure, but early interventions and symptomatic treatment can help improve patients' quality of life. Managing body temperature is critical since patients are prone to hyperthermia due to a lack of sweat glands. Skin treatment, eye dryness management, nutrition and activity monitoring are also recommended,' he said. The situation is further complicated by the fact that genetic testing needed to confirm a diagnosis still has to be sent overseas, adding cost and delaying treatment, said Dr Tae, noting that while Malaysia has basic facilities, local capacity remains insufficient. SOCIAL SUPPORT Dr Tae also emphasised the importance of genetic counselling for at-risk families, as well as the use of technologies such as Preimplantation Genetic Diagnosis (PGD) through In Vitro Fertilisation (IVF) to prevent the transmission of the HED gene to future generations. This counselling, he said, not only helps couples understand their risks and options, but also provides critical emotional support in facing this genetic challenge. With this approach, it is hoped that new cases can be reduced, thereby improving the quality of life for patients and their families in the long term, he added. In addition to medical challenges, HED patients also face a lack of social support, with most relying on general organisations like MRDS, which covers various rare diseases. Dr Tae also noted that the physical appearance of HED patients - such as sparse hair and missing teeth - has a significant psychosocial impact. "Although patients' intellectual ability is normal, their appearance often leads to misunderstanding and marginalisation, causing emotional distress. In fact, there have been cases where patients required psychiatric treatment and incidents of suicide due to prolonged social pressure," he said. Dr Tae further explained that although the government has listed rare diseases including HED in its official registry, related policies are still in draft form, hindering the allocation of special funding for treatment and support. "Treatments like dental implants, which are vital for HED patients, are not fully covered by the government. Treatment costs can run into the thousands of ringgit, which is a heavy burden for patients and families,' he added. Another burden is that most health insurance providers do not cover congenital conditions. Dr Tae stressed that it is time for the government to take a systemic approach in managing rare diseases - covering policy, specialist training, social support, and financial protection. "While the focus is often on major diseases like diabetes and cancer, the voices of rare disease patients can no longer be ignored,' he said. As for Mohamad Syafiq, he simply hopes the government will help provide treatment and targeted support for people like him - including job opportunities. "We don't want sympathy, just a fair chance to be independent and contribute,' he said. - BERNAMA More Like This
Barnama
10-06-2025
- Health
- Barnama
HED Sufferers: Unable To Sweat, Shadowed By Stigma
B orn with the rare genetic condition Hypohidrotic Ectodermal Dysplasia (HED), Mohamad Syafiq Zulkarnain has grown accustomed to the curious stares he often attracts. While he has come to terms with his distinctive appearance — marked by sparse hair and widely spaced, pointed teeth — these features are not his greatest concern. What troubles him most is the relentless heat he must endure every day. 'HED prevents my body from producing sweat, which exposes me to the risk of heat stroke if my body temperature exceeds the normal range. So I have to frequently wet my body and avoid staying out in the sun for too long,' the 35-year-old man told Bernama recently. HED is a genetic disorder that affects the development of ectodermal tissues such as skin, hair, teeth, and sweat glands. According to the World Health Organisation, HED is among more than 7,000 rare diseases identified so far and affects about 3.5 to 5.9 per cent of the global population. However, HED patients in Malaysia face even greater challenges due to a lack of medical specialists to manage this incurable condition. This has led to delayed diagnoses, which in turn increases life-threatening risks. EARLY DIAGNOSIS Mohamad Syafiq, the eldest of four siblings, said he was fortunate that his mother, who worked in healthcare, recognised early on that something was amiss when he was still a baby. 'When I was a baby, my mother and grandmother noticed that I was always fussy in hot weather, crying every night, and only calm when I slept shirtless under a fan. 'They also noticed I would tire easily in the heat, did not sweat, and still had no teeth by the age of two. That was when they began seeking a diagnosis for my condition,' he said, adding that his first tooth only appeared when he was two and a half years old. This early diagnosis allowed his family to take preventive steps, especially during hot weather — measures that ultimately saved his life. 'I once lost a fellow HED patient to heat stroke during an outdoor activity. Like me, he couldn't sweat, and his body temperature spiked suddenly during a hike,' he said, adding that the incident made him extra cautious. This is why Mohamad Syafiq, who hails from Seri Manjung, Perak doesn't mind the odd looks he gets when he sprays himself with water, even in public. 'I always carry a wet towel and a spray bottle wherever I go. The water spray acts as 'artificial sweat' to help cool me down when my body temperature rises,' he explained. His inability to sweat also makes his skin prone to severe dryness and eczema, requiring him to routinely apply moisturising lotion and steroid cream. He also has to be careful about what he eats due to his dental condition. 'I can't eat hard foods like nuts or chewy foods. Sometimes my speech is unclear. Many patients need special dentures or implants to overcome this limitation,' he added. STIGMA Recalling his school days, Mohamad Syafiq said that unlike his peers, he couldn't participate in sports and was given 'special treatment' — such as being seated in a classroom near the toilets so he could cool down and wet his body more easily. 'I rarely joined outdoor or sports activities that lasted long in the sun, due to the risk of heat stroke. Sometimes classmates thought I was the teachers' 'favourite' because of this,' he said. The stigma has followed him into adulthood. Even with a degree, finding a job has been difficult. 'I was unemployed for a long time because it was difficult to find a job suited to my condition. I often failed interviews as employers struggled to understand my speech, and when I explained my HED, they assumed I wasn't strong or productive enough,' said the holder of a Master of Science in Information Management from Universiti Teknologi MARA, who now works as a freelancer. The stigma isn't limited to the public; it also exists among professionals. 'I was once told that my life wasn't 'interesting enough' to be featured in the media because I didn't 'look bad enough',' said Syafiq, who also serves as a coordinator for the HED support group under the Malaysian Rare Disorders Society (MRDS). He added that public awareness of rare genetic diseases, including HED, is very low, with some patients only diagnosed in adulthood — missing the chance for early treatment and support. STRENGTHENING THE TREATMENT SYSTEM Meanwhile, Clinical Geneticist and Pediatric Consultant Dr Tae Sok Kun said one of the biggest challenges for patients with rare genetic diseases like HED is getting an accurate diagnosis early. 'I see this delay in getting an accurate diagnosis as a 'diagnostic odyssey' — a long and exhausting journey emotionally, mentally, and financially. 'Many parents don't realise that symptoms like delayed tooth growth or lack of hair are important signs. They think it's just normal delay and don't seek early treatment,' said the specialist from the University Malaya Medical Centre (UMMC). He added that Malaysia also lacks specialists — currently only around 13 to 15 clinical geneticists nationwide — and the referral system is still unstructured. 'In fact, many general doctors themselves don't know where to refer cases like HED, which shows an urgent need to strengthen the referral structure and early exposure to rare diseases in medical training,' he said. 'In terms of treatment, HED is a genetic disease with no cure, but early interventions and symptomatic treatment can help improve patients' quality of life. Managing body temperature is critical since patients are prone to hyperthermia due to a lack of sweat glands. Skin treatment, eye dryness management, nutrition, and activity monitoring are also recommended,' he said. The situation is further complicated by the fact that genetic testing needed to confirm a diagnosis still has to be sent overseas, adding cost and delaying treatment, said Dr Tae, noting that while Malaysia has basic facilities, local capacity remains insufficient. SOCIAL SUPPORT Dr Tae also emphasised the importance of genetic counselling for at-risk families, as well as the use of technologies such as Preimplantation Genetic Diagnosis (PGD) through In Vitro Fertilisation (IVF) to prevent the transmission of the HED gene to future generations. This counselling, he said, not only helps couples understand their risks and options, but also provides critical emotional support in facing this genetic challenge. With this approach, it is hoped that new cases can be reduced, thereby improving the quality of life for patients and their families in the long term, he added. In addition to medical challenges, HED patients also face a lack of social support, with most relying on general organisations like MRDS, which covers various rare diseases. Dr Tae also noted that the physical appearance of HED patients — such as sparse hair and missing teeth — has a significant psychosocial impact. 'Although patients' intellectual ability is normal, their appearance often leads to misunderstanding and marginalisation, causing emotional distress. In fact, there have been cases where patients required psychiatric treatment and incidents of suicide due to prolonged social pressure," he said. Dr Tae further explained that although the government has listed rare diseases including HED in its official registry, related policies are still in draft form, hindering the allocation of special funding for treatment and support. 'Treatments like dental implants, which are vital for HED patients, are not fully covered by the government. Treatment costs can run into the thousands of ringgit, which is a heavy burden for patients and families,' he added. Another burden is that most health insurance providers do not cover congenital conditions. Dr Tae stressed that it is time for the government to take a systemic approach in managing rare diseases — covering policy, specialist training, social support, and financial protection. 'While the focus is often on major diseases like diabetes and cancer, the voices of rare disease patients can no longer be ignored,' he said. As for Mohamad Syafiq, he simply hopes the government will help provide treatment and targeted support for people like him — including job opportunities. 'We don't want sympathy, just a fair chance to be independent and contribute,' he said.
Forbes
29-05-2025
- Business
- Forbes
Modular Housing Offers Good Design, Efficiency And Value
The Whidbey Puzzle Project showcases an off grid, net zero home built with modular construction. In the midst of an ongoing housing crisis, more attention is focusing on modular construction for its efficiencies in labor, time and costs. Those efficiencies stem from the modular construction process, but can be exponentially improved with simple design. Otis Odell, housing and mixed-use sector leader at design and construction firm HED, began exploring modular construction years ago in ski resort towns where the building season was limited by the climate. While he now advocates for the method, he acknowledges it has challenges. In one of his recent projects, despite having a well recognized general contractor and fabricator, the project team still wasn't able to realize its targeted results because of ongoing, known challenges. 'Achieving cost and time savings with modular in some ways depends on some level of standardization that has little to no variation or complexity,' he advises. 'You start to understand what is important about the design is that it can deliver a functioning kitchen, a place to eat, has light, has outdoor space access, and if those unit layouts are repeated hundreds of times that's OK because what ultimately makes it home is what the resident brings into the space.' To realize the efficiencies and standardization, a project has to start and finish with strong cross-functional collaboration. The project's architects and fabricators have to coordinate closely to ensure modular-friendly designs. Any time there are misaligned expectations between stakeholders, it can take the budget and timeline completely off the rails. 'The fabricator making shop drawings should get all stakeholders together to understand the scope of work of each entity, the general contractor and major sub trades, in the pre-construction phase,' Odell said. 'When they aren't familiar enough with the scope to provide actual pricing, it leads to a miss on project goals.' Modular can be more efficient and cost effective with better collaboration, communication and ... More consistency. Odell has a vision to create a platform that flips the script. 'Instead of a standard process to deliver housing – design, award, price – I want to flip it to be price, award, design,' he said. 'Typically, a firm is asked for a preliminary package and they rarely can match budget so we are creating a pricing module with three years of information in a database with number of units, unit mix, zip code, and it can generate a price in seconds.' With well-defined scopes, Odell believes he can deliver units at an 85% ready level with a ready set of drawings including all BIM models so it is easy to collaborate with a fabricator. The standardization and efficiency that Odell wants to deliver for housing is a reality for hospitality projects he has been involved in. 'The quantity of modules through standardization is essential, and we were able to get the number of modular types from 11 to 7 for a standard hotel layout,' he said. 'It took $2 million out of the project costs from the fabrication standpoint. Reducing the variations is easier in the hospitality space than in the housing space.' Right now his company has created six bay designs that can deliver a studio, plus one-, two- and three-bedroom units with the goal to have 80% permit ready documents of the modules. Odell anticipates that in housing, there will be a need for customization and variation, so he's working on computational design and using scripts that will have the ability to respond to clients' and developers' goals. Some groups, like Model/Z, also are experimenting and exploring standardization efficiencies to deliver attainable workforce housing projects across the country. Modules are fit for purpose, to be transported easily to a job site to be placed on a pin ... More foundation. Whidbey Puzzle Prefab is approaching modular construction in a similar way—focusing on the replication. 'We saw an opportunity to create a higher quality, more sustainable product that could be replicated,' said the company's architect Matt Wittman. 'Flexibility is the key factor. A lot of prefab has larger modules, we divided it into multiple smaller units to be easier to be transported on any highway without special permits. That was a driver.' The modules are flexible and interchangeable to be put together in multiple configurations; assembled in infinite ways that can be custom to the set location, whether it is in the city or the woods, in Florida or in Maine. Modules are premade individually and then connected with outdoor walkways that all sit on a pin foundation with a ring beam producing walkways and decks as in between space. The modules also are light on the land and environmentally sustainable. Modules have solar, heat pumps, hydronic heating and cooling, energy recovery ventilation, and smart home controls to monitor energy use. These features support the advanced insulated envelope to meet net zero. The roof is extra insulated, achieving R-50, which is a 70% increase over base line code, and the walls are double the code. The roof also is designed to channel rainwater into a tank where it can be purified with a custom filtration system to be safe for use in kitchens, bathrooms, showers, washing machines, and dishwashers. Whidbey shared a cost breakdown, which is based on the company's current low volume, but at scale could break through some affordability challenges. The prototype project costs $676 per square foot. With the net zero, off grid design, operational costs are eliminated. No concrete is used since the home uses a steel ground frame foundation with hand set micro pin piles that also mean less ground disturbance. This unique foundation can reduce the carbon footprint by 77% compared to a concrete foundation. The pin foundation has to be engineered to meet the same criteria as a conventional concrete foundation, so it is equal in performance. A conventional concrete foundation would have 30,000 pounds of Co2, the pin foundation is only 7,000 pounds, and meets all the same structural requirements. The install labor is about the same, but the pin foundation doesn't need any excavation, so time and labor is saved there, along with the fact that there is no destruction and impact to the earth. Currently, the modules are manually assembled in a factory with builder partners. From Odell's data-informed, repeatable designs to Whidbey's flexible, net-zero prefab systems, the future of modular housing looks increasingly sustainable, scalable and cost effective. While customization remains a hurdle, innovations in computational design and manufacturing partnerships are pushing the limits of what prefab construction can offer. As modular solutions evolve, they promise to transform how we build homes in the years ahead.
Yahoo
27-05-2025
- Business
- Yahoo
New Mexico touts rising higher education enrollment
New Mexico Higher Education officials on May 27, 2025 reported the second year of growth for public college and university enrollment in the state. College enrollment in New Mexico had a 4.2% increase this spring compared with 2024, reflecting the second consecutive year of growth, the state Higher Education Department announced on Tuesday. HED says more than 5,000 additional students are attending higher education institutions across the state, growth officials attribute to the state's Opportunity and Lottery scholarships. According to the state, close to 30 two-year and four-year higher education institutions participate in the Opportunity Scholarship program, which covers fees and program costs for certificate and degree programs for New Mexico residents who plan to enroll in at least six credit hours at one of the state's public college or universities. The Legislature approved the Opportunity Scholarship, which Gov. Michelle Lujan Grisham championed, in 2022. Eligible residents for the state's Lottery Scholarship must be enrolled full time in a New Mexico public college or university within 16 months of graduation and maintain a 2.5 grade point average. The state in 2021 restored the Lottery Scholarship to provide 100% of tuition, following reduced coverage implemented in 2016. Last year, the governor signed Senate Bill 159, which created a close to $1 billion trust fund and scholarship program fund for the state's tuition-free programs. According to NMHED, more than 34,000 students are receiving financial assistance through the Opportunity Scholarship and close to 10,000 students received Lottery scholarships during the spring semester. 'The Opportunity and Lottery scholarships are fulfilling their goal of empowering tens of thousands of New Mexicans to pursue a college education at no cost for tuition and create a more prosperous future for themselves and their families,' Higher Education Secretary Stephanie M. Rodriguez said in a statement. 'As we always say, there is no wrong door to higher education in New Mexico, and we are dedicated to supporting programs that broaden opportunities for our state.' In a recent interview with Source NM, Lujan Grisham cited the state's investment in both early childhood and higher education as accomplishments from her tenure as governor. 'No state in the nation has our cradle to career system,' she said.
Yahoo
09-05-2025
- Business
- Yahoo
Mandatory training coming soon for NM university boards of regents
The four new members of the Western New Mexico University board of regents met for the first time on April 9, 2025. (Screenshot of meeting) Starting next month, regents on New Mexico university boards will have to complete 10 hours of training to prepare them for their roles in guiding academic institutions. Senate Bill 19, sponsored by Sen. Jeff Steinborn (D-Las Cruces), directs the New Mexico Department of Higher Education to develop those training hours to include topics such as state law, financial management, institutional governance and student success. The HED is tasked with providing the training and ensuring regents comply. Gov. Michelle Lujan Grisham signed SB19 on April 8 and the bill goes into effect on June 20. The bill states that current regents must complete the training by Dec. 31 this year. Higher Education Department Spokesperson Auriella Ortiz told Source NM in a written statement that members of the department have started considering requirements and platforms for the training, which she said is projected to be completed by the end of the year. 'Since the agency has provided a similar type of training for regents in the past, this process is not new to us,' Ortiz wrote. Steven Neville, a former state senator who represented San Juan County, recently took over as chair of the Western New Mexico University Board of Regents. The entire board consists of four new members after previous members resigned or concluded their tenure in late 2024 and early 2025, following the board's controversial decision to award outgoing university President Joseph Shepard a $1.9 million severance package. Attorney General Raúl Torrez filed a civil suit against Shepard and the board in an effort to recover the state funds. A hearing is scheduled in June to consider Shepard's motion to dismiss the case against him. Neville told Source NM that he has a lot of knowledge about state law and financial management from his time as a lawmaker and member of the Legislative Finance Committee, which he will use in his new role, but university management is still different. 'There're certain things about the way universities run that are totally different than my county commission experience or my city council experience or even my state senate experience,' Neville said. 'I've been on several boards and commissions through the years, but nothing is exactly the same.' He added that all four members of the board need some aspect of the future training, despite everyone's background. He said the HED provided all new regents with a short orientation over a couple of hours when they were first appointed, but hopes that future training also involves more explanation of higher education policies and funding 'intricacies that are a little different from one agency to the next.' Ortiz reiterated to Source that the HED already provides training to newly appointed and reappointed regents covering topics such as governance, ethics, fiscal management and state and federal laws. 'Adding a requirement of 10 hours will enhance a governing boards' understanding of their appointed or elected positions in addition to the tools they need to better champion students, faculty and staff on their campuses,' Ortiz wrote. 'It is important to note that Higher Education Secretary Stephanie M. Rodriguez and our colleagues at the department are always available to assist governing board members at any time beyond the training sessions.' During the session earlier this year, Steinborn told Senate Education Committee members that he introduced the bill to ensure regents are prepared for their work in hiring university presidents, setting tuition and other actions that fundamentally impact students and faculty. SB19 was one of several bills and resolutions introduced this session that would have addressed the process for how regents are chosen and the preparation they receive for fulfilling their roles. Steinborn also introduced Senate Joint Resolution 7, which would have required the governor to choose regent nominees from a pool of candidates approved by a nominating committee. House Joint Resolution 12, introduced by Rep. Nathan Small (D-Las Cruces), would have codified regents' fiduciary duties; moved regent removal proceedings to the district courts; and allowed the attorney general or a majority of the board to initiate the removal of a regent. Both resolutions would have required a ballot vote to amend the state constitution, however both died in committee. 'I think we owe it to our universities and our kids and taxpayers that we have the best regents we can get and that they're trained,' Steinborn said during the committee meeting. SUBSCRIBE: GET THE MORNING HEADLINES DELIVERED TO YOUR INBOX
