Home / Health / Jesy Nelson: England Lags on Baby SMA Tests
Jesy Nelson: England Lags on Baby SMA Tests
23 Mar
Summary
- Scotland now screens newborns for rare muscle disease.
- Jesy Nelson's twins were diagnosed with SMA.
- Nelson campaigns for wider SMA testing in England.
Scotland has made history by becoming the first UK nation to implement newborn screening for spinal muscular atrophy (SMA). This significant development brings a sense of bittersweetness for former Little Mix singer Jesy Nelson, whose twin daughters, Ocean Jade and Story Monroe Nelson, were diagnosed with the genetic condition.
Nelson, who announced her daughters' diagnosis earlier this year, has been a vocal advocate for universal SMA screening. She highlighted that early detection and treatment are crucial for mitigating the most devastating effects of SMA, which causes progressive muscle wasting.
Despite Scotland's proactive step, Nelson voiced her disappointment on social media regarding the lack of similar screening in England. She emphasized the profound difference early testing could have made for her children and countless others, vowing to continue her campaign for change.
The NHS describes SMA as a condition leading to muscle weakness, breathing difficulties, and movement problems. Nelson's twins received treatment to replace a missing gene, but it cannot restore already lost muscle function.
Nelson's advocacy, including a petition that garnered over 100,000 signatures, has led to SMA screening being considered for the newborn blood spot test. She has also become a patron for Spinal Muscular Atrophy UK and has met with Health Secretary Wes Streeting to discuss the benefits of early detection.
