Useful websites relating to haemophilia treatment

Dr Keith Barnard recommends websites about haemophilia

History of the disease
It makes a change to recommend something historical rather than clinical, but you will learn about the genetics of haemophilia from reading this highly entertaining piece.

It tells the story of how Queen Victoria had a desire for some ‘strong blood’ in her family, and the so-called curse of the Coburgs, supposedly dating from the early 19th century, when an uncharitable monk became jealous of a relative who married into royalty and wealth.

In a most unfriendly fashion, he cursed future generations of Coburgs with haemophilia.

This had nothing to do with Victoria’s offspring, but the tale of how her progeny spread the condition through the European aristocracy as monarchs arranged marriages to consolidate political alliances makes a good read.

Haemophilia popped up in Spain, Russia, and Prussia, and there are some colourful family trees to illustrate the point. 

Why go there: treat yourself in your coffee break.
Downside: won’t help much clinically; but so what?
Information from: National Centre for Case Study Teaching in Science.
Address: www.sciencecases.org/hemo/hemo.asp

The clotting cascade
Being only human, my eyes always tend to glaze over when lecturers put up those amazingly complicated slides of the clotting mechanism. Because most of my colleagues are probably human too, I feel there is a need to direct you to a website where you will be able to look at a diagram of the clotting cascade, doze off and return to it at will.

That way we may all have a greater understanding of this system, that in my view is one of nature’s most remarkable achievements — how blood stays liquid inside and goes lumpy outside.

A knowledge of the cascade is essential to understanding conditions such as haemophilia and this is probably as straightforward an account as you will get, courtesy of our anaesthetic colleagues.

Why go there: brush up your cascades.
Downside: you still need to concentrate.
Information from: Anaesthesia UK.
Address: www.anaesthesiauk.com/article.aspx?articleid =100096

Arthropathy
GPs do not see a lot of cases of arthropathy queuing up to see them on a Monday morning, but that does not mean we should not know about them.

This case history is based on a patient in India, where perhaps they do not get such prompt treatment as they might in the UK.

The key thing about this three-page PDF is that there are some decent X-ray images that demonstrate only too clearly the disastrous things that can happen to a joint if this potentially destructive process is left unchecked.

Why go there: to look at the X-rays.
Downside: for interest only.
Information from: Journal of Medical Education and Research.
Address: www.jkscience.org/ volume74/case/haemophilic%20arthropathy.pdf

Patient information
I am going to be a bit unkind about this site.

It is dull, with no life or colour in its information pages and I could find nothing for health professionals.

Another problem was that some of the links on this website do not work, notably to the ‘Parent Free Zone’, which is child free too, it seems.

However, having knocked this website, if you want good, independent advice, have no fears about sending your patients to these pages.

It is just a shame they have not worked a little harder on the presentation.

Why go there: good patient site.
Downside: unremittingly uninspiring.
Information from: The Haemophilia Society.
Address: www.haemophilia.org.uk/


Website of the week
I was immediately attracted to this site with its splash of colour and clean looks, but what really drew me in was that these pages are by doctors for doctors.

Haemophilia is not a condition GPs come across very often so it is reassuring to have the support that this site offers.

There is a list of all the haemophilia centres in the UK complete with contact details, a whole host of guidelines, publications and reviews.

Some of it is pretty high powered, so it is not exactly the place to go for a quick scan of general information, but if you have a problem with a patient or a complex issue to deal with, this must be the place to start.

Why go there: mostly for the haemophilia centres’ data.
Downside: aimed at the specialist.
Information from: UK Haemophilia Centre Doctors’ Organisation.
Address: www.ukhcdo.org/

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