Jesy Nelson ‘Outraged’ After MPs Debate Muscle Condition That Affects Her Twins
The title of this post, is the same as that of this article on the BBC.
This is the sub-heading.
Former Little Mix singer Jesy Nelson says she is “heartbroken” and “outraged” by MPs, following a debate about spinal muscular atrophy (SMA) testing in parliament.
These two paragraphs add some more details.
The singer has been campaigning for newborn babies to be screened for the muscle-wasting disease after her twins, Ocean Jade and Story Monroe Nelson, were diagnosed with it.
Caught early, the condition is treatable. Without diagnosis, it can cause death within two years.
I am coeliac and I believe my youngest son, also suffered from the disease.
- His late mother also believed he was coeliac.
- But he refused to get tested.
- He died at the age of 37 from pancreatic cancer, as his weakened immune system couldn’t protect him.
- Italy has recognised the problems that undiagnosed coeliac disease causes and now tests all babies for coeliac disease and type 1 diabetes.
I wrote about it in Italy Leads The World In Screening For Coeliac Disease.
How Is The Testing Of Babies In Italy For Coeliac Disease And Type 1 Diabetes Going?
I asked Google AI the question in the title of this post and received this reply.
Testing babies and children for coeliac disease and type 1 diabetes in Italy is progressing successfully, rooted in groundbreaking legislation. Italy is the first country to pass a national law (Law 130/2023) mandating mass screening for these conditions in children aged 1 to 17.
The pilot project, known as the D1Ce Screen, was rolled out in four key regions: Lombardia, Sardegna, Marche, and Campania. Testing is typically conducted at ages 2, 6, and 10.
Here is how the rollout is progressing based on interim data and reports:
Pilot Study Success: The screening involves a simple capillary (finger-prick) blood draw administered by primary care pediatricians. Participation in the initial phase was high, with over 75% of pediatricians and thousands of children successfully screened.
Higher-Than-Average Positivity Rates: Preliminary data revealed that approximately 2.8% to 2.9% of children tested positive for coeliac-specific antibodies—more than double the global average of 1% to 1.4%. Additionally, around 0.8% of children displayed markers for type 1 diabetes.
Early Detection: The pilot has proven highly effective at identifying asymptomatic or “silent” cases of both conditions early, which is vital for preventing acute complications like Diabetic Ketoacidosis (DKA) and avoiding the long-term impacts of undiagnosed coeliac disease.
High Public Acceptance: Surveys from the pilot regions indicate that more than 90% of parents are highly willing to have their children screened, though general public awareness of the national program is still being scaled up.
Following these successful pilot rollouts, the government continues to expand the screening program to ensure full, nationwide coverage to protect at-risk children before severe symptoms develop.
The Anonymous Widower 