JAKARTA – Early diagnosis is one of the important factors in handling Spinal Muscular Atrophy (SMA) in Indonesia
In addition to impacting the patient’s medical condition, the rare disease also has psychosocial and economic consequences for patients and their families
The Head of the Integrated Service Center for Rare Diseases at the Cipto Mangunkusumo Hospital, Prof. Dr. Damayanti Rusli Sjarif, Ph.D, Sp.A, Subsp. NPM (K), said that the management of SMA requires strengthening the health service ecosystem as a whole
According to him, the ecosystem includes increasing public awareness, strengthening the capacity of health workers, an effective referral system, multidisciplinary services, and an integrated patient data system
“The entry of therapeutic innovations into Indonesia must be balanced with the strengthening of an integrated medical referral system from primary service facilities to rare disease referral centers, as well as national policies in the treatment and financing of rare diseases, including SMA,” he said
From an economic perspective, the course of SMA disease can put pressure on families due to the need for health services, long-term monitoring, and multidisciplinary support that must be met by patients
Therefore, a faster diagnosis is considered important so that patients can immediately receive appropriate treatment. Early treatment also has the potential to help maintain the patient’s motor function as the disease-modifying therapy progresses
Head of the Neurology Coordination Working Unit of the Indonesian Pediatric Association (IDAI), dr. Amanda Soebadi, Sp.A, Subsp. Neuro(K), M.Med (Clin Neurophysiol), said that a number of symptoms need to be recognized from the beginning, such as muscle weakness, delayed motor development, babies who seem limp or floppy babies, and swallowing and breathing disorders
“In high school, time is very valuable. Damaged motor neurons cannot regenerate,” said Amanda
He added, the earlier the diagnosis is established, the greater the chance to maintain the patient’s motor function
Meanwhile, the Head Lecturer of the Faculty of Medicine, Public Health, and Nursing at Gadjah Mada University, Dr. Dian Kesumapramudya Nurputra, Ph.D., M.Sc., Sp.A, Subsp. Neuro(K), said the journey of SMA patients begins with the introduction of symptoms, confirmation of diagnosis through genetic testing, to getting the appropriate therapy and monitoring
He assessed that strengthening the referral system, patient registry, and health service readiness are important parts to increase the external discharge of SMA patients in Indonesia
A study of adolescent SMA patients treated at Dr. Sardjito Hospital in the period 2018-2024 showed that SMA Type II was the most common type with a proportion of 42.4%
The average age of diagnosis was recorded at 5.45 months in SMA Type I patients and 18.8 months in Type II patients. These data show the importance of early identification of symptoms and diagnosis
From a family perspective, the Chairman of the SMA Indonesia Foundation, Syl educational, and financial impacts
Limited information, the length of the diagnosis process, and the need for integrated services and long-term support are challenges faced by patient families
“For the family of high school students, a delay in diagnosis can mean the loss of a very valuable opportunity,” said Sylvia
According to him, increased public awareness is needed so that more children can be diagnosed earlier and receive proper treatment
The presence of therapeutic innovation in Indonesia, continued Sylpact of SMA disease, as well as emphasizing the importance of ensuring that the innovation can be followed by the readiness of the health system and financing
The English, Chinese, Japanese, Arabic, and French versions are automatically generated by the AI. So there may still be inaccuracies in translating, please always see Indonesian as our main language.
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