Websites on haemoglobinopathies

Websites related to this week's Clinical Review selected by Dr Keith Barnard.

BETA THALASSAEMIA

I had forgotten that this was called Cooley's anaemia, but the name brought into focus an image from medical school. There I was with my fellow students, sitting in the haematology laboratory looking down microscopes and pretending we could see target cells and anisopoikilocytosis.

Thalassaemia remains an important condition, and knowing the physiology and genetic minutiae has not helped it go away. These pages from eMedicine will give you an expansive account of the disease, and explains that, in some parts of the world, it might affect as many as 10 per cent of the population. It's up to date too - it was last revised only a few months ago.

Why go there: It provides all you need to know.
Downside: There is a rather complex presentation.
Information from Division of Haematology, New York University School of
Medicine.
Address www.emedicine.com/med/topic2260.htm

PATIENT INFORMATION

This address takes you straight to a page that explains in a clear, simple style all about sickle cell anaemia.

I particularly like the brief animation that shows a nice smooth rounded red blood cell changing into a nasty spiky thing that is going to wreak havoc by getting stuck in small blood vessels.

It's a great example of a simple graphic demonstrating something that you could talk for ages about and still not get the idea across. This site should answer most patients' questions.

Why go there: Concise.
Downside: None.
Information from Sickle Cell Disease Association of America Inc.
Address www.sicklecelldisease.org/about_scd/index.phtml

THALASSAEMIA AWARENESS CAMPAIGN

This PDF is part of the UK Thalassaemia Society website. Now I'm not saying it's anything to do with me, but last time I wrote about this site I complained that it had a negative image because it carried a picture of a child plugged in to a blood transfusion with the message 'Tied for life' attached to it.

The child has now disappeared, and if you open this page you will see a much more upbeat approach for the charity's Asian awareness campaign, with a great, colour picture of attractive, smiling young people to start you off.

Good for them, and good to know about this, especially if you are in an area with a high proportion of Asian patients.

Why go there: Become aware of this campaign.
Downside: The rest of the site is as dull as ditchwater.
Information from UK Thalassaemia Society.
Address http://www.ukts.org/pdfs/awareness/asianaware.pdf

- Dr Barnard is a former GP in Fareham, Hampshire

 

WEBSITE OF THE WEEK

The NHS has been slowly introducing a national sickle cell and thalassaemia screening programme. It has had a long gestation period, but is a good scheme.

The plan is to ultimately offer sickle cell screening to all infants as an integral part of the newborn bloodspot screening programme, and to offer sickle cell and thalassaemia screening to all women as an integral part of early antenatal care.

The map indicates that progress is being made, but hard luck at the moment if you happen to live in middle England, the south coast counties or Wales.

You can find out if your trust has a high or low prevalence of these haemoglobinopathies on this website.

I have to carp about something, and it's this: the screening programme has commissioned a media company to handle its public relations. Now I bet that didn't come cheap - wouldn't the money be better spent on something really useful, like actually expanding the screening?

Why go there: Details of a worthwhile programme.
Downside: Not easy to navigate the site.
Information from NHS Sickle Cell & Thalassaemia Screening Programme
Address www.kcl-phs.org.uk/haemscreening/


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