Spinal Muscular Atrophy: Our Hope & Story, Together We Can Make A Different

Spinal Muscular Atrophy (SMA) is a rare genetic disease that causes progressive weakness of muscle function. Loss of physical ability, respiratory and digestive disorders, and scoliosis are among the main risks for SMA patients.

There are now Spinraza, Ridisplam, and Zolgensma treatments that can help stop the deterioration and improve muscle function. Some SMA Fighters who have successfully received treatment have shown a very encouraging increase in health and muscle capacity. However, the big challenge is that the price of this drug is very expensive and is not included in the list of drugs that are subsidized by the government.

In addition to treatment, the need for early diagnosis also needs to be provided, especially for families with a history of SMA. With the "Newborn Screening" method, SMA disease can be detected in the early stages of pregnancy.

Since the level of mental ability of SMA Fighters is very high, the provision of support systems including learning and employment systems should also be emphasized.

SMAM - SMA Malaysia members urge the government to take immediate action to ensure that all SMA Fighters receive the right treatment and support system for a better quality of life.

Surely the challenge of high treatment and care costs can be overcome with the cooperation of all parties. Come with us to make this dream come true.

#SMAM #SMAfighters
#GeneJunction #SynapseLaboratory
#KKM #MoF