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Last Updated: Sunday, 19 June, 2005, 07:13 GMT 08:13 UK
Teen on diabetes awareness mission
By Jane Elliott
BBC News health reporter

Tilly Dunne
Tilly needs daily blood tests and insulin injections
Tilly Dunne is flying to Washington this weekend in an attempt to raise international awareness of a disease she has lived with since the age of two.

The 12-year-old also hopes to learn more about treating her diabetes.

"When I was younger I couldn't understand why I had to have diabetes and insulin injections and why doctors couldn't cure me," she said.

"I would love to have just one day without having to do tests and injections and really hope that in the future a cure will be found so that I can be 'normal.'"

Lobby

Tilly will be representing the UK at the Juvenile Diabetes Research Foundation's (JDRF) Children's Congress.

The congress aims to raise international awareness of type 1 diabetes, which occurs when the body usually produces no insulin, which is in turn needed to regulate glucose levels in the bloodstream.

It will also help lobby the US Senate for more research funding.

I have real problems maintaining a balanced blood sugar level
Tilly Dunne

Tilly, from Herefordshire, and five other international delegates will be partnered with US representatives to learn how to lobby their own governments and try to raise the profile of the condition when they return home.

"I think it is a really exciting opportunity and I can't wait to go," she said.

Tilly said she constantly struggled to balance her own condition.

"I have real problems maintaining a balanced blood sugar level, possibly due to my age, so I test myself very regularly.

"I also need to do this to avoid the short and long-term complications that low and high blood glucose levels can cause, but I am not always successful despite my best efforts."

Complications

Type 1, or juvenile diabetes, currently affects about 350,000 people in the UK and is increasing by 3-4% each year across Europe.

It usually develops in childhood and insulin injections and daily blood tests are vital to ensure insulin levels are balanced.

Long-term complications can include blindness, heart attacks, kidney failure, stroke and nerve damage, and amputations may be necessary.

As a country we [the UK] are still far behind the US in terms of dedicating funds to support the search for a cure for the condition
Anwen Jones,
JDRF

Tilly's mother Domenica said that before her daughter was diagnosed, she had not idea what was wrong with her.

"Till started drinking vast amounts - pints and pints of water - and urinating very frequently," she said.

"She also became quite tired and lost weight, but we just thought it was over- excitement due to the festive season.

"It wasn't until New Year's Day when she practically fell asleep whilst out for a walk that we knew something was seriously wrong.

"Our doctor did a test for diabetes and then sent us straight to the hospital where we quickly had to grasp everything that having type 1 diabetes means and learn how to give our two-year-old daughter regular injections and blood tests."

She said the US trip would benefit Tilly and others by raising the profile of the condition.

"It is a chance for children from all over the world to get together and express solidarity, and give people a focus so they can see how children with diabetes are coping."

'Rare opportunity'

Claire Pesterfield, a paediatric specialist diabetic nurse, based at Addenbrooke's Hospital in Cambridge, said a lot of ignorance still existed about diabetes and how to manage it.

She said type 1 diabetes could develop at any age, but was most common between the ages of five to puberty, and parents needed to be alert to the signs.

"Children show signs of drinking lots and going to the loo, they lose weight and have no energy and can get easily tired."

Anwen Jones, chief executive of the JDRF, said Tilly and the other delegates could help to make a real difference.

"Attending the Children's Congress is an important and rare opportunity for Tilly and the other international delegates to learn how best to engage with government in the search for a cure for type 1 diabetes.

"The UK is leading the way in many important scientific fields, including stem cell research which is producing extremely promising results.

"However as a country we are still far behind the US in terms of dedicating funds to support the search for a cure for the condition."




SEE ALSO:
Expert fires new diabetes warning
15 Jun 05 |  Scotland


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