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BBC News feature on PSD

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http://news.bbc.co.uk/1/hi/health/3040109.stm

'No-one knew about my blood condition'

Jane Elliott

BBC News Online health staff

Published: 2003/08/26 00:27:00 GMT

Each week for six weeks James Slattery-Kavanagh complained to his GP about a problem in his legs. His doctor told him he thought the strange marks were insect bites. But James was sure there was a deeper problem. Eventually he could not walk and rushed to casualty, where doctors diagnosed a deep vein thrombosis.

Clot

A year later James suffered from a pulmonary embolism - or clot in the lung. But doctors were still mystified at what was causing James problems. He was only in his 20s and had not been on any long distance flights and there seemed no obvious reason for his problems. But a series of tests revealed he was suffering from a genetic condition called Protein S Deficiency. Protein S is an anti-coagulant, but people with a deficiency are at greater risk of suffering from blood clots. He bruises more easily than other people, has bad varicose veins and poor circulation. He takes daily blood thinners so even a trip to the dentist takes weeks of planning to ensure that does not lose too much blood during any treatment. Protein S Deficiency is very rare and only affects about one person in 200,000 in the UK population.

Rare

James found it was so rare that he had no-one to turn to for information and support. So the web designer set up his own page to allow sufferers like himself make contact and share experiences. "All they could tell me is that Protein S was life threatening, but that they can't do anything about it. "I went for a few years not knowing anything about it. So I put something up and then I started getting emails from all over the world from people saying they had the same thing." Many people had worrying tales to tell. Some told of heart attacks or relatives who had suffered problems and others who had difficulty conceiving or sustaining a pregnancy because of their condition. He said the web-site helped users keep informed about medical breakthroughs, health insurance and useful advice about here to get medic alert bracelets, to warn people of their condition in case of an accident.

Website

He said the website helped to fill knowledge gaps. "I think the NHS does a very good job in the primary care, but is not interested in preventative work. There is nobody following up on you afterwards. You are just left to get on with it." Dr Rooben Arya, consultant haematologist at King's College, London, said patients like James could do certain things to avoid problems. "There are certain things they can do to avoid the risks of clots. "In someone who is Protein S deficient they can avoid clots by avoiding the oral contraceptive pill, avoiding hormone replacement therapy and taking prophylactic measures if they are having surgery or have to face a flight of more than four hours."

Related Internet Links

Protein S Deficiency and Thrombophilia

http://www.protein.org.uk/

King's College London

http://www.kcl.ac.uk/

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Thank you for that article James. I know exactly how one feels when one is first struck with this condition. I thought I was all alone. It is a terrible feeling. You have made us feel not so alone and I for one would like to thank you for that.

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From our web site statistics I can see that we had about three times as many visits as usual on the day the article was published (26 Aug 2003: 468), gradually dropping back to usual levels five days later.

I have also been contacted by a number of people who were on our mailing list and had questions and didn't appear to be aware of information published on our web pages or our online forum so I will have to think of additional strategies to ensure people know what our site has to offer (perhaps people skim read or it is information overload).

Jane Elliot, the author of the BBC News article, contacted me today to say that she received an email from someone who was glad to see Protein S Deficiency highlighted.

Although I would have preferred Protein S Deficiency to have taken centre stage, rather than myself, I think this has been a very useful PR exercise and am very pleased with the results.

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Guest mikes245

How accurate is the 1 in 200,000 figure that was quoted in the feature? If that was right then there would only be about 300 of us in the UK and we would almost certainly all be related.

I've just discovered this site after coming out of hospital yesterday following my second PE and second DVT a week ago. The first incident happened eight years ago when tests were also instigated on my three siblings - both my parents are dead. These showed that one brother had PSD but the other two hadn't. My three children need to be tested.

My mother was never tested but she had a history of clots and strokes and gave birth to two still-born babies.

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Guest MaryJ

Thank you for hosting this site, James. It is almost impossible to find information on PSD and your site has

been a blessing.

MaryJ

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