Malaysian Rare Disorders Society Tags | Motherhood Malaysia

Cardiologists, patients, carers and the Malaysian Rare Disorders Society (MRDS) came together today for Dengarlah Degupan Kami (Hear Our Heartbeat), a forum convened by the Department of Cardiology, Hospital Serdang and supported by Pfizer Malaysia, to raise awareness of transthyretin amyloid cardiomyopathy (ATTR-CM), a rare and under-recognised heart condition whose symptoms can resemble more common cardiovascular conditions or be attributed to ageing1,2. ATTR-CM develops when a protein called transthyretin loses its normal shape and builds up in the heart muscle, causing the heart wall to thicken and stiffen over time2,3. Symptoms can include persistent breathlessness, swelling of the legs and ankles, and fatigue1,2. Because these symptoms can overlap with other cardiovascular conditions or be mistaken for changes associated with ageing, ATTR-CM can be challenging to recognise1-3. Published evidence cited in Malaysia’s recently developed expert consensus on ATTR-CM shows that patients can experience a delay of several years between the onset of symptoms and receiving a diagnosis1. The Years Before A Name At the heart of Hear Our Heartbeat was the lived experience of a Malaysian patient, who shared his journey from unexplained changes in health to receiving an ATTR-CM diagnosis, as well as how the condition has shaped everyday life for both him and his family. “For about three months I knew something was not right. I got tired very easily when I walked, and at night I could feel that something was wrong with my heart. It was my children who urged me to get checked, and that was when doctors found that my heart had become enlarged,” said Mr Teoh Eng Hoe, who is living with ATTR-CM. ATTR-CM patient Teoh Eng Hoe shares his experience living with the rare heart condition “My message to anyone who notices something similar is simple: go and get checked, and do it early. I still have to watch my diet, and I cannot do strenuous exercise. That said, I continue to live my life, and I still look forward to travelling in my retirement.” “ATTR-CM can be challenging to recognise because symptoms such as breathlessness, fatigue and swelling are also seen in more common cardiovascular conditions and may sometimes be attributed to ageing. Dr Saravanan Vengadesa Pillai discusses ATTR-CM awareness and symptom recognition What we want people to understand is that persistent or worsening changes in their health deserve attention. Greater awareness, both among healthcare professionals and the public, can help ensure that patients who may require further assessment are directed towards appropriate care,” said Dr Saravanan Vengadesa Pillai, Consultant Cardiologist, Department of Cardiology, Hospital Serdang. Growing Clinical Attention to ATTR-CM in Malaysia The conversation comes at a time when Malaysia’s clinical community is also strengthening local understanding of ATTR-CM. In July 2026, a multidisciplinary panel of Malaysian clinicians across cardiology, haematology, nuclear medicine and other related specialties published the country’s first expert consensus and clinical pathway recommendations for ATTR-CM in the International Journal of Heart Failure1. The consensus provides locally relevant recommendations to support Malaysian clinicians in the recognition, assessment and management of suspected ATTR-CM. The development adds to growing local attention towards the condition, which has been included in the Malaysian Rare Disease List since 20231. The consensus has also highlighted the potential value of establishing a local patient registry for cardiac amyloidosis to strengthen disease understanding, collaboration and research in Malaysia1. Individually Rare, Collectively Significant MRDS, participating as a community partner, widened the conversation beyond ATTR-CM to the experiences of individuals and families across Malaysia’s wider rare-disease community. For many families, the journey towards a rare-disease diagnosis can involve uncertainty, limited awareness of the condition and difficulty knowing where to seek appropriate information and support. Beyond the patient, carers and family members can also find themselves adapting their daily lives around the needs of someone living with a rare condition. Malaysian Rare Disorders Society representative Allida Muhammad speaks about rare-disease awareness and family support “For many people living with a rare disease, one of the hardest parts of the journey is simply finding out what is wrong. Families may know that something has changed, yet not know where to turn or what questions to ask. This is why awareness and support matter,” said Puan Allida Muhammad binti Said, Vice President, Malaysian Rare Disorders Society. “Rare diseases may be individually rare, but collectively they affect a significant community4. Every patient deserves to be seen, heard and supported so that receiving a diagnosis becomes not the end of the search but the beginning of a supported journey.” Added Puan Allida. Continuing the Conversation The conversation will continue beyond the forum in the lead-up to World Amyloidosis Day on 26 October, with Pfizer Malaysia supporting a series of social media health-awareness content aimed at improving public understanding of amyloidosis and ATTR-CM, including signs and symptoms that may warrant discussion with a healthcare professional. “Pfizer has a long-standing commitment to disease education and to the rare-disease community in Malaysia. Conversations such as Hear Our Heartbeat matter because greater awareness begins with better understanding,” said Tan Hui Yee, Specialty Care & Internal Medicine Marketing Lead, MISP Cluster, Pfizer. “By bringing together healthcare professionals, patients, caregivers and patient advocates, we hope to help make conditions such as ATTR-CM better understood and encourage more informed conversations about health.” The forum closed with a shared message that persistent changes in health should not automatically be dismissed as part of getting older. People experiencing unexplained or worsening symptoms such as breathlessness, fatigue or swelling were encouraged to discuss these changes with a healthcare professional. By bringing clinical knowledge together with the voices of patients, carers and advocates, Hear Our Heartbeat sought to make an under-recognised condition easier to recognise, discuss and understand. Disclaimer: The information provided in this article is for informational purposes only and should not be considered as medical advice from Motherhood. For any health-related concerns, it is advisable to consult with a qualified healthcare professional or medical practitioner. For more insightful stories and parenting advice, stay tuned to Motherhood Story!

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Hear Our Heartbeat Brings Patients, Clinicians and Advocates Together to Spotlight Under-Recognised Heart Condition ATTR-CM