All posts tagged: SMA

SMA screening: Jesy Nelson’s tearful TV encounter with Wes Streeting to be shown in new Amazon Prime Video documentary

SMA screening: Jesy Nelson’s tearful TV encounter with Wes Streeting to be shown in new Amazon Prime Video documentary

Published by Daniella Wilson

Get the latest entertainment news, reviews and star-studded interviews with our Independent Culture email Get the latest entertainment news with our free Culture newsletter Get the latest entertainment news with our free Culture newsletter Jesy Nelson’s tearful interview with former health secretary Wes Streeting over the rollout of “life-changing” spinal muscular atrophy screening is set to be shown in a new documentary. The former Little Mix star, 35, will be the subject of a new Prime Video documentary Jesy Nelson: Life Changing, which is released on Friday. The series follows her fight to change UK newborn screening laws after her twins, Ocean Jade and Story Monroe, were diagnosed with the rare condition SMA. In the documentary, Nelson interviews Mr Streeting for ITV’s This Morning programme. She asks him: “Why now? Why did it take for me to come along with a platform for people to take it seriously?” Former Little Mix singer Jesy Nelson in Parliament Square (PA) (PA Wire) Streeting said his inbox had been “full of people asking the same questions” but added …

Jesy Nelson outraged at health minister over SMA screening ‘postcode lottery’

Jesy Nelson outraged at health minister over SMA screening ‘postcode lottery’

Published by Daniella Wilson

Get the inside track from Roisin O’Connor with our free weekly music newsletter Now Hear This Get our free music newsletter Now Hear This Get our free music newsletter Now Hear This Former Little Mix star Jesy Nelson has expressed profound outrage at Members of Parliament following a recent debate concerning spinal muscular atrophy (SMA) testing, describing the situation as a “postcode lottery” for vulnerable newborns. The singer, visibly emotional in a nearly seven-minute video, shared her “heartbreak” after Public Health Minister Sharon Hodgson argued against a full national rollout of SMA screening. Nelson’s impassioned campaign for universal newborn screening stems from her personal experience, as her twin daughters, Ocean Jade and Story Monroe Nelson, were both diagnosed with the rare condition, which leads to progressive muscle wastage. The parliamentary debate on Monday followed a petition launched by Nelson, which garnered over 150,000 signatures. While it was announced that SMA screening would be introduced as part of in-screening evaluations (ISE) from October 2026 – three months earlier than initially planned – Nelson contends that this …

Jesy Nelson outraged at health minister over SMA screening ‘postcode lottery’

Jesy Nelson ‘heartbroken’ as she hits out at health minister over SMA screening roll-out

Published by Daniella Wilson

Get the latest entertainment news, reviews and star-studded interviews with our Independent Culture email Get the latest entertainment news with our free Culture newsletter Get the latest entertainment news with our free Culture newsletter Former Little Mix star Jesy Nelson has expressed her “heartbreak” and “outrage” at MPs following a parliamentary debate on spinal muscular atrophy (SMA) testing. The 35-year-old singer appeared visibly distressed in a video, reacting to public health minister Sharon Hodgson’s arguments against a comprehensive SMA screening roll-out. Ms Nelson has been a vocal campaigner for universal newborn screening for the rare condition, which causes progressive muscle wastage. Her advocacy began after her twins, Ocean Jade and Story Monroe Nelson, received an SMA diagnosis. The recent debate on Monday was prompted by a petition launched by Ms Nelson, which garnered over 150,000 signatures. While it led to an announcement that SMA screening would be introduced as part of in-screening evaluations (ISE) from October 2026 – earlier than planned – Ms Nelson remains critical. She says that the limited roll-out is “not ethical” …

What is SMA? Key signs to look out for in babies as Jesy Nelson highlights life-changing condition

What is SMA? Key signs to look out for in babies as Jesy Nelson highlights life-changing condition

Published by Daniella Wilson

Get the Well Enough newsletter with Harry Bullmore for tips on living a healthier, happier and longer life Get the Well Enough email with Harry Bullmore Get the Well Enough email with Harry Bullmore Hundreds of children living with spinal muscular atrophy (SMA) are set to benefit from two life-changing treatments, which have now received official approval for routine use across the NHS. Nusinersen, an injectable drug and the first disease-modifying therapy for SMA, alongside the oral treatment risdiplam, were previously only available through a special access scheme. This allowed for further evidence on their effectiveness to be gathered. However, the National Institute for Health and Care Excellence (NICE) has now formally endorsed both therapies for widespread implementation in England. Without medical intervention, the most severe form of SMA (Type 1) can progress rapidly, with Muscular Dystrophy UK estimating a life expectancy of less than two years. Yet, NHS England has confirmed these therapies have already enabled 73 children with the condition to survive to age five or older. Public awareness of SMA increased significantly …

5 early signs of SMA for parents to look out for

5 early signs of SMA for parents to look out for

Published by Daniella Wilson

Get the Well Enough newsletter with Harry Bullmore for tips on living a healthier, happier and longer life Get the Well Enough email with Harry Bullmore Get the Well Enough email with Harry Bullmore Two life-changing treatments have been given the green light for routine NHS use, offering renewed hope to hundreds of children living with spinal muscular atrophy (SMA). Nusinersen, an injectable drug and the first-ever disease-modifying therapy for SMA, and oral treatment risdiplam were previously only accessible through a special scheme while further evidence on their effectiveness was gathered. However, the National Institute for Health and Care Excellence (NICE) has now officially approved both treatments for routine and widespread use across the NHS in England. Without medical intervention, symptoms of the most severe form of SMA (Type 1) can progress quickly, with life expectancy estimated at less than two years, according to Muscular Dystrophy UK, but now NHS England said the therapies have now helped 73 children with the condition survive to aged five or older. Many people first became aware of SMA …

Jesy Nelson celebrates plans for rollout of SMA screenings | UK News

Jesy Nelson celebrates plans for rollout of SMA screenings | UK News

Published by Daniella Wilson

Jesy Nelson has spoken of her pride after it was announced screenings for spinal muscular atrophy will begin earlier than planned. The former Little Mix star has campaigned for all newborn babies to be screened for the rare condition after her twins, Ocean Jade and Story Monroe Nelson, were diagnosed. They were found to have the condition, which causes progressive muscle wastage, which Nelson says means they will probably never walk, after being born prematurely last year. The 34-year-old launched a petition for more health checks for babies, appearing on Sky News to promote her campaign, and it reached 100,000 signatures. You need javascript enabled to view this content Enable javascript to share Share Struggle to diagnose ‘life or death’ condition Health Secretary Wes Streeting has now announced the checks will be rolled out as part of in-screening evaluations from this October, rather than January 2027. These are used to test proposed screening programmes before they are adopted nationally. In a letter to Nelson and Giles Lomax, the boss of the SMA UK charity, Mr …

What is SMA? The rare genetic condition that Jesy Nelson’s twin daughters have

What is SMA? The rare genetic condition that Jesy Nelson’s twin daughters have

Published by Daniella Wilson

Get the Well Enough newsletter with Harry Bullmore for tips on living a healthier, happier and longer life Get the Well Enough email with Harry Bullmore Get the Well Enough email with Harry Bullmore Former Little Mix star Jesy Nelson has revealed her twin daughters, Ocean Jade and Story Monroe Nelson-Foster, have been diagnosed with Spinal Muscular Atrophy (SMA) Type 1, a rare genetic condition that may prevent them from ever walking. The 34-year-old singer, who welcomed the twins prematurely last May with Zion Foster, shared the diagnosis in an emotional Instagram video last year. She detailed the “gruelling three/four months” leading to the discovery, after an “endless” series of appointments confirmed her daughters had “a severe muscle disease called SMA Type 1.” Nelson has since begun campaigning for SMA1 screenings from birth, and started a petition to add the condition to the newborn blood spot screening test, also known as the heel prick test. In an emotional conversation with Health Secretary Wes Streeting on ITV’s This Morning, Nelson said: “It’s just madness to me …

Urgent recall for Nestle SMA baby formula as fresh batch contains toxi | UK | News

Urgent recall for Nestle SMA baby formula as fresh batch contains toxi | UK | News

Published by Sam Flores

A fresh batch of a Nestle baby formula product has been recalled following the discovery of a food poisoning toxin. The new group has been added to several batches of the food giant’s SMA infant formula and follow-on formula that were recalled in January amid concerns they contained the cereulide toxin. This can cause nausea, vomiting and abdominal cramps if consumed. It was confirmed by the Food Standards Agency on Friday that arachidonic acid (ARA) oil, which plays an important role in infant development and is added to formula to ensure non-breastfed babies receive it, was the affected ingredient. The latest batch to be recalled is 800g packs of SMA Advanced First Infant Milk with a best before date of December 2027 and marked 53390346AB. It was only distributed in Northern Ireland, according to the FSA. Nestle said in a statement that the product recall was being made “out of an abundance of caution” as there have been no confirmed reports of any illness in connection with the product. Other Nestle products affected by the …

Boy diagnosed with SMA after first symptoms dismissed as ‘totally normal’

Boy diagnosed with SMA after first symptoms dismissed as ‘totally normal’

Published by Daniella Wilson

Sign up to our free Living Well email for advice on living a happier, healthier and longer life Live your life healthier and happier with our free weekly Living Well newsletter Live your life healthier and happier with our free weekly Living Well newsletter A mother whose son has the same rare neuromuscular condition as singer Jesy Nelson’s twins has said she wants her to know, “it’s going to be OK”. Sophie and Aden Cooke’s son Sid, now four, was diagnosed with spinal muscular atrophy type 1 (SMA1) at four months old in August 2021 after Sophie noticed movement, swallowing and breathing issues. SMA causes progressive muscle wasting and weakness – and while the effects vary person to person, it can impact the ability to sit, crawl and walk, along with the ability to swallow and breathe independently. Sophie, 37, now a full-time carer for Sid, and her husband Aden, 38, from Yalding in Kent, said their son was fortunate to receive a one-off gene therapy in September 2021, which has a reported list price …

What Is SMA Type 1? Jesy Nelson Reveals Twins Have Genetic Condition

What Is SMA Type 1? Jesy Nelson Reveals Twins Have Genetic Condition

Published by Sam Flores

Jesy Nelson is opening up about her twin daughters’ diagnosis of spinal muscular atrophy (SMA). The genetic condition is characterised by weakness and wasting in the skeletal muscles, which causes severe problems with movement. In a candid Instagram video, the singer said her mum previously noticed her daughters’ legs weren’t moving “as they should be”, but she hadn’t been too concerned as they were born prematurely and medical staff had mentioned they would develop at their own pace. However when her twins, Ocean Jade and Story Monroe, began to struggle with feeding, they sought help and “after the most gruelling three, four months, and endless appointments, the girls have now been diagnosed with a severe muscle disease called SMA type 1”, the singer revealed. What is SMA type 1? SMA is usually grouped into types, based on the person’s age when the symptoms occur, and how they affect sitting, standing and walking. SMA type 1, also known as Werdnig-Hoffman disease, usually occurs in babies less than six months old. Per the NHS, symptoms can include: …