Singer Jesy Nelson is on a mission to ensure all babies are tested for Spinal Muscular Atrophy (SMA), a rare muscle disease, at birth. In a heartfelt Instagram post, Nelson shared the devastating news that her twin daughters have been diagnosed with SMA, a condition that affects every muscle in the body, including the legs, arms, breathing, and swallowing. She is now campaigning for SMA to be included in the NHS blood test typically conducted at five days old, which currently screens for ten other conditions. But here's where it gets controversial... Nelson believes that SMA should be part of the newborn screening heel prick test from birth, a move that could spark debate among healthcare professionals and policymakers. And this is the part most people miss... While the NHS has approved a life-changing gene therapy drug called Zolgensma for treating SMA, the timing of the diagnosis is critical, as irreversible damage may have already occurred in the nervous system. Scotland is already set to start routinely screening babies for SMA from spring, and the National Screening Committee is reviewing whether to introduce it across the UK. Nelson's campaign joins the efforts of SMA UK, which advocates for routine screening to be added to the NHS newborn blood spot test, which currently screens for conditions like cystic fibrosis and sickle cell disease. The NHS has responded by highlighting the three new treatments for SMA rolled out since 2019, which have helped hundreds of children. However, Nelson's personal experience has shed light on the challenges of early diagnosis and the need for more widespread screening. So, what do you think? Should SMA be included in the newborn screening test? Share your thoughts in the comments below and let's keep the conversation going!
