
Sandakan hospital relocates X-ray services
Published on: Thursday, May 01, 2025
Published on: Thu, May 01, 2025
By: Mardinah Jikur Text Size: The hospital greatly appreciates the patience and cooperation of everyone who received the service during this period. - Bernama pic SANDAKAN: All X-ray services for outpatients and non-critical emergency cases at the Duchess of Kent Hospital (HDOK) here have been temporarily relocated to the X-ray Unit adjacent to the Eye Ward in the hospital's old building. HDOK Director Dr Mohd Fahmie Othman said it was done carefully to ensure radiology services continue without affecting patient treatment. He said on April 28, a certified technician from the supplier conducted an inspection and repair on the X-ray machine located on the 4th floor of the Specialist Clinic, which had been experiencing technical issues since April 17. 'The inspection revealed that the voltage adjustment system (AVR) component was damaged and required a complete replacement. 'As the replacement component was not available in the local market, the supplier took immediate action to procure the component from overseas. 'The hospital is currently awaiting the arrival of the component in order to proceed with the repair and full restoration of the machine,' he added in a statement. He said the hospital greatly appreciates the patience and cooperation of everyone who received the service during this period. * Follow us on Instagram and join our Telegram and/or WhatsApp channel(s) for the latest news you don't want to miss. * Do you have access to the Daily Express e-paper and online exclusive news? Check out subscription plans available.
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New Straits Times
29 minutes ago
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Malay Mail
2 hours ago
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Living with HED: Unable to sweat, shadowed by stigma
KUALA LUMPUR, June 11 — 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 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. Mohamad Syafiq Zulkarnain, 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. — Bernama pic 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 Paediatric 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). She 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,' she 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,' she 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, she 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, she 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,' she 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,' she 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,' she 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.


Sinar Daily
9 hours ago
- Sinar Daily
Harsheetaa dies in US due to multiple organ failure, sepsis
Harsheetaa, who studied at the same school where her parents teach, had been battling heterotaxy since birth. 10 Jun 2025 08:29pm Harsheetaa, who studied at the same school where her parents teach, had been battling heterotaxy since birth. - Photo source: R. Selva Ganapathy via Bernama KUALA LUMPUR - Eight-year-old S. Harsheetaa Sai, who had undergone heart surgery in the United States, passed away yesterday due to multiple organ failure and sepsis. The news was confirmed by her father, R. Selva Ganapathy, a teacher at Sekolah Jenis Kebangsaan Tamil Saraswathy in Sungai Buloh. Harsheetaa, who studied at the same school where her parents teach, had been battling heterotaxy since birth. She had been receiving treatment at Boston Children's Hospital, a leading medical centre in Massachusetts, since April. "Our hearts are heavy beyond words. Our brave little angel, Harsheetaa, who fought with all her strength, has now found peace in a place beyond pain and struggle. "She took her final breath at 1.10 am yesterday at Boston Children's Hospital. After putting up a courageous fight for days, her little body could no longer bear the pain,' said her father in a statement. Selva Ganapathy said Harsheetaa was surrounded by love, prayers, and the deepest care, adding that details of the final rites will be announced later. Meanwhile, Political Secretary to the Prime Minister, Datuk Ahmad Farhan Fauzi, shared his condolences with the family on Instagram. He also mentioned that the Prime Minister Datuk Seri Anwar Ibrahim had extended financial assistance to Harsheetaa's family, which he personally delivered during a visit to their home in Batu Caves, Selangor, on March 20. Heterotaxy is a rare congenital disorder in which internal organs develop in abnormal positions due to improper left-right patterning during fetal development. It commonly affects the heart, lungs, liver, spleen, and intestines, often leading to severe complications. Previously, Selva Ganapathy expressed his gratitude to Malaysians for raising RM1.5 million to fund his daughter's heart surgery. - BERNAMA