All posts tagged: 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: …