Book helps children deal with rare condition

She decided to do something about it.

In the last five years since she started awareness and fund-raising for the Lymphoedema Service at Leeds Teaching Hospitals,

she has raised more than 32,000. This money has allowed Dr Jacqueline Todd, physiotherapist consultant in lymphoedema, along with Katie and George, now 10, to write the award-winning Big Book of Lymphoedema.

The book is aimed at children with the condition, which causes swelling of the limbs due to the failure of the lymphatic system.

"When George was diagnosed there was just nothing out there which explained to him what was happening to him," explains Katie from South Cave, near Brough.

"There is quite a lot of information for adults with lymphoedema, but there was nothing anywhere in the world for children," explains Dr Todd.

With the help of Duncan Cleave, from Open Door Design, in Leeds, who created the graphics, The Big Book of Lymphoedema became a reality.

"We wanted to create something which children could relate to that wasn't going to frighten them. This condition cannot be cured but it can be helped but it is all about education," said Dr Todd.

"What Katie's fund-raising did was to allow us to produce the book and also send a free copy to every child that we knew with the condition and medics in the field."

The success of the book has seen it sold across the world and even be translated into Dutch. But it has also been recognised from within the medical profession by recently winning the British Medical Association's Patient Information Award.

Katie travelled with Dr Todd to receive the award.

She said: "It was amazing to find out that we had been highly commended but then to find out we had won was an incredible accolade."

"Winning something like that really helps to raise the profile of the book but also the condition," said Dr Todd.

"Lymphoedema is seen as quite rare in children, but I have a suspicion that there are a lot more children out there with swollen limbs who are not being diagnosed. The earlier we get to see the children the better."

Katie's fund-raising has also helped to set up a website www.lymteen.co.uk for older children and teenagers who have different issues with the condition.

"It is important for teenagers to know they are not alone. Not many teenagers read books but they do go on line and so we felt that the website was the best way of getting information across to them and to give them somewhere they can go for support and advice and the realise that they are not alone," says Dr Todd.

This is another reason why Katie and Dr Todd and the Leeds Lymphoedema Service are holding a Hallowe'en Fun Day at Xscape on Sunday.

"It is it the first time that all the families affected by lymphoedema will have got together," explains Katie.

"They will get the chance to take part in lot of fun activities and it is also a chance for the families to get together and give each other support. We hope that one day it might turn into a national event."

LYMPHOEDEMA - THE FACTS

Lymphoedema is a swelling that develops as a result of an impaired lymphatic system. It can affect any part of the body but is most commonly seen in arms and legs. At least 100,000 people in the UK may be affected, including more than 1,800 children.

Primary lymphoedema is usually determined from birth and arises due to some failure of the lymphatic system itself. Secondary lymphoedema is the result of some problem outside of the lymphatic system that prevents it working properly, such as cancer treatment