Jesy Nelson Campaigns for Universal SMA Testing in Newborns
In a powerful display of advocacy, singer Jesy Nelson has taken on a mission to ensure all babies undergo testing for Spinal Muscular Atrophy (SMA), a rare muscle disease, at birth. Her personal experience with her twin daughters' diagnosis has fueled her determination to make a difference.
During the weekend, Nelson revealed that her seven-month-old daughters have SMA, a condition that affects the body's muscles and can significantly impact mobility. She shared her story on Instagram, detailing the challenges her family has faced over the past few months, including numerous appointments and a grueling diagnostic process.
Nelson's advocacy focuses on adding SMA to the NHS's newborn screening heel prick test, which currently checks for 10 other conditions. She is launching a petition to include SMA in this essential screening, emphasizing her unwavering commitment to making it a reality.
The pop star expressed her gratitude for the overwhelming support she has received since sharing her story. She described SMA as the 'most severe muscular disease,' affecting every muscle in the body, from legs and arms to breathing and swallowing. Nelson highlighted the early signs her daughters were showing, such as limited leg movement and feeding difficulties, which led to their SMA diagnosis.
According to Nelson, SMA can be devastating if not treated promptly, as it gradually weakens the muscles, potentially reducing a baby's life expectancy to under two years if left untreated. Fortunately, her daughters have received treatment, but the long-term outlook remains challenging.
Doctors have informed Nelson that her daughters are unlikely to walk or regain neck strength, which could lead to disabilities. This diagnosis has sparked a passionate response from the public, with Health Secretary Wes Streeting acknowledging Nelson's right to challenge the diagnostic process.
Streeting pledged to address the issue of SMA screening and explore the potential of genomic medicine. The NHS has already approved a life-changing gene therapy drug called Zolgensma for treating SMA in babies. However, the timing of treatment is crucial, as irreversible damage to the nervous system may have already occurred.
Scotland has taken a proactive step by implementing routine SMA screening for newborns, and the National Screening Committee is considering a similar approach across the UK. Nelson's campaign aligns with SMA UK's efforts to introduce SMA screening to the NHS's newborn blood spot test, which currently focuses on conditions like cystic fibrosis and sickle cell disease.
