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September 10, 2007

This is so cheering

Quinnbradleex I came across this through the VCFS group on Facebook (yes, thank you, I know, I'm too old for Facebook). Quinn Bradlee has DiGeorge syndrome/VCFS and practically lived in hospital until he was 16.

"He kept having all these terrible things wrong with him," says his mother, Sally Quinn, a Washington Post writer. (His dad is Ben Bradlee, as in Watergate).  "You'd turn around one day, and whammo — it was something else. … You never knew where the next bomb was going to go off. We couldn't figure out what was happening." He wasn't diagnosed until he was a teenager.

Anyway - Quinn (pictured) is now 25 and has helped make a documentary about the syndrome. It's called Anomaly Syndrome 22. I need to see this, and so do a number of you - I'll find out where it is and get back to you. Here's an article about Quinn, DiGeorge/VCFS and the whole shebang, courtesy of USA Today. I find myself curiously uplifted of a Monday morning.

Posted by India Knight on September 10, 2007 at 09:10 AM in 22q11 Deletion | Permalink | Comments (5) | TrackBack (0) | Email this post

Face-reading and genetic anomalies

Sciface110The Times and The Guardian both have articles today about pioneering research that uses computerised 3-D  images to analyse children's faces for anomalies indicative of genetic conditions. We all know what Down's syndrome looks like, but a vast number of lesser-known conditions also come with their own facial indicators. In my daughter's case this includes low-set ears (I am obsessed with people's ears as a result and stare at everyone's - there are a lot of low-set ears about, it turns out, including mine), a long nose (rather chic I think) and a slight wonkiness to the skull and face.

We took part in this project three years ago - Nell's father took her to the Institute of Child Health in London to have her face photographed in 3D and I remember him saying how odd it was to be in a room full of individual children who, en masse, all looked vaguely familiar because they had some facial characteristics in common.

This is the project of Dr Peter Hammond, of the IoCH. He says in today's Guardian: "Some specialists will be able to make a diagnosis as soon as a patient comes through the door, but some of these conditions are very rare, and it can take a lot of experience to recognise them. Some doctors will only have read about cases in journal papers," Dr Hammond said.

"Doctors can use this to focus in on the likely disorder before beginning genetic tests, which can cost £500 to £1,000 each, so the children and the parents should get a cheaper, quicker diagnosis."

Posted by India Knight on September 10, 2007 at 08:55 AM | Permalink | Comments (5) | TrackBack (0) | Email this post

September 06, 2007

Bears shit in the woods - official

Gbear The Daily Mail, the Times and the Guardian all have front-page stories about the Food Standards Agency finally (30 years after the link was first made) conceding that there is a clear link between childhood  hyperactivity/disruptive behaviour and food and drink additives. According to the Guardian, the food and drink additive industry is worth $25 billion, or £12.4 billion. So, let's take a guess - is the FSA going to ban these additives, as in Norway, or just, you know, shrug its shoulders and advise parents to go easy on the fluorescent orange drinks for a while?

The Guardian has a brilliant graphic that shows the rise in prescription drugs, such as Ritalin, to combat hyperactivity, but you'll have to go and buy a copy because it's not online. You can read Felicity Lawrence's excellent piece on all this here. I remember writing a column years ago saying I didn't believe in the majority of ADHD cases and that in my view most of them were diet-related, or made a hundred times worse by diet. I got called every name under the sun by incensed readers. I still think I was right - and that parents that feed their children this crap are perpetrating a form of abuse.

The two graphics below are stolen from the Daily Mail. I don't know why the bear is so squashed-looking.

Enumbers2dm_468x288

Enumbers1dm_468x387

Posted by India Knight on September 06, 2007 at 02:00 PM in Current Affairs | Permalink | Comments (4) | TrackBack (0) | Email this post

India Knight


  • India Knight was born in 1965. She lives in London with her three children, writes a weekly column for The Sunday Times and has written two fiction books, My life on a plate and Don't you want me? and a non-fiction book, The Shops. After writing an article in The Sunday Times about her daughter's special needs (Nell has a cardiac condition called truncus arteriosus, and DiGeorge Syndrome, aka 22q11 deletion) she was so inundated with e-mails that she has launched this weblog as a forum for parents in a similar position to keep in touch, compare notes and help each other. You can read about India and her daughter here.

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