Coeliac Journey Through Covid-19 – Should Newborns Be Tested For Coeliac Disease?
Should Newborns Be Tested For Coeliac Disease?
This article on the BBC is entitled Newborns To Get Rapid Genetic Disease Diagnosis.
This is the sub-heading.
Rare genetic disorders will be diagnosed and treated in babies thanks to a project to sequence the complete DNA of 100,000 newborns.
These are the first four paragraphs.
It should spare hundreds of families in England months, or years, of anguish waiting to find out why their children are ill.
The project is the first time that whole genome sequencing (WGS) has been offered to healthy babies in the NHS.
It will screen for around 200 disorders, all of them treatable.
The Newborn Genomes Programme, to begin next year, is thought to be the biggest study of its kind in the world. If successful, it could be rolled out across the country.
- My family have suffered greatly because of coeliac disease, as I related in Coeliac Journey Through Covid-19 – The Pain Of Coeliac Disease.
- Coeliac disease affects at least 1-in-100 of the UK population.
- The test is not difficult to perform.
I believe that for these reasons, coeliac disease must be one of the diseases that are tested for in the Newborn Genomes Programme.
The Anonymous Widower 
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It is great for diseases like coeliac disease, phenylketonuria, various allergies etc which are present at birth, and can be managed well by medication, diet, or other treatments. But I would be very concerned if the tests looked for adult onset diseases such as Huntingdon’s Disease, I am aware of young people who asked for gene test for it as soon as they are 18 and can do that, to be so horrified that they will develop the disease they have watched a parent suffer from and probably die from. I don’t think them know them knowing that from birth would help at all.
I am aware that I have 4 genetically linked diseases:
Coeliac – diagnosed at 49
Early onset T2 diabetes – grew up knowing quite a few family members had it, so I was regularly tested from my late 20s. When I did develop it, it was very early and control was and still is fairly straightforward.
As a family history researcher, I have discovered that in one direct line on my dad’s side a lot of people died of bowel cancer. So I am aware of those sort of issues.
And finally glaucoma – dad, grandad, great grandmother, and according the book written about the village that family came from the whole of that family “went blind in old age. I am very good at going to optician for tests for that.
Important that I know about them now at 65, but didnt need to know at birth. As adults my daughters know the family history too.
Comment by nosnikrapzil | May 10, 2023 |
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