Fighting back against heart defects

By Jane Elliott
Health reporter, BBC News

Saz has had seven major operations

Saz Salisbury does not let her serious heart defect stop her from leading an active life.

She has been in the school choir, a school counsellor, school librarian and even a mentor for younger children.

Now the 16-year-old from Nottinghamshire, has helped to launch a website to inform teenagers about their hearts.

Around 4,600 babies each year are born with a heart defect.

Sal's condition is so complex she has had seven major operations since birth and needs a wheelchair to get around.

Vital link

"My only hope of a better quality of life now is a heart and lung transplant," she said.

"I've been told I probably wouldn't be suitable because of the scar tissue from the previous operations - but I will never give up hope. Hope is what keeps you going."

For Saz the British Heart Foundation's interactive website yheart.net is an important means of keeping in touch with others.

One of the things I hate is when people stare at me in my wheelchair or they ignore me and talk about me to the person who is pushing me instead Saz Salisbury

Not only does the site offer advice for all teenagers on keeping your heart healthy, it also has a safe and secure forum where teenagers, with heart conditions, like Saz, can go to talk to others.

"It is good to be able to express how we are feeling to others," said Saz.

"Through it I can meet other people with heart conditions.

Saz's heart problems VSD - A hole in the heart (between the left and right ventricle - the bottom chambers of the heart) Pulmonary Artesia - a complete blockage between the heart and the pulmonary artery (the artery which leads to the lungs) Major aorta pulmonary collateral arteries - extra arteries

"Some people might not have the same heart conditions as you, but they might have the same problems as you.

"I think it will help others know they are not on their own and that there are other people they talk to."

Talking through problems

Saz said being a teenager was tough enough for anyone, but her condition had created additional difficulties and strains.

"I used to just get on with it when I was younger, but now that I am a teenager everyone else is going out shopping and things," she said.

"They are much more independent than me and it is frustrating that I can't do what other people are doing.

Saz hopes for future breakthroughs to ease her health problems

"When you are younger your mum and dad have to take you everywhere anyway.

"Now even though I am older, my mum has to go with me and it is frustrating because I am 16 and she shouldn't have to do that."

Saz said other people could be unwittingly cruel and that she hoped an informative website would have a positive effect by helping to raise awareness.

"One of the things I hate is when people stare at me in my wheelchair or they ignore me and talk about me to the person who is pushing me instead," she said.

"When I get out of my wheelchair some people think I shouldn't have a wheelchair if I can walk - they don't realise that I can only walk short distances.

"I've been called names and once, my so-called friends took me for a walk in my wheelchair but couldn't be bothered to take me back home.

"I have had my mobility scooter hidden from where it was left whilst I was in lessons too. People can be very cruel."

Creating the website

The site, which includes information about smoking, drugs, healthy eating and keeping fit, was devised by heart experts and teenagers like Saz.

Unlike other websites it is written for them, not their parents Stephanie Lillie British Heart Foundation

Nicki Cooper, Head of Heart Health at the BHF said: "We wanted to create a website that spoke to teenagers and that's why we involved teams of teenage pilot testers for different sections.

"They told us what they wanted to see on the website, and that's why it's full of useful stuff about the heart and what we can do to keep it in the best condition we can."

Stephanie Lillie, BHF heart health coordinator and heart nurse, said the website filled a vital gap by getting information to teenagers about subjects they need.

"We thought this was the best way of reaching teenagers with heart conditions and those who don't, to give them the information in a fun way," she said.

"We asked the teenagers, aged between 13-17, what they wanted and we had them decide what should go on the site. They came up with some fantastic ideas and basically built this website.

"They really have been very proactive - they wrote all the stories about themselves.

"The site has lots of good information that they need to know about their lifestyle, about drugs and what it will do to your heart.

"And unlike other websites it is written for them, not their parents.

"It is about stuff they can relate to."