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Last Updated: Sunday, 26 March 2006, 23:35 GMT 00:35 UK
'I wanted to hear positive stories'
By Jane Elliott
BBC News website health reporter

Vishal Joshi
Teenagers can get information from the website
When Vishal Joshi was diagnosed with cancer, aged just 14, he wanted to hear positive stories about other young people who had fought the disease.

Teenagers like himself, who could tell him about their experiences of Hodgkin's disease and prepare him for what lay ahead.

But he found little aimed specifically at his age group.

Because of his own experiences, Vishal decided to share his story on special website 'Youth Health Talk', which has launched this week to help young people learn about their health from their peers.

These are teenagers first and have an illness second
Dr Ann McPherson, Dipex founder

The inspiration for the site came from the experiences of a girl with cancer.

She had heard about the Dipex - the Database of Individual Patient Experience - site for adults which colleagues of her father ran, and wanted something similar for people her own age.

Sadly, she died before the site was completed, but staff have dedicated the cancer section to her.

Vishal, now aged 19, from Leicester, said knowing there were other teenagers going through the same problems as him would have made it easier.

"It is a really hard place to be," he explained.

"It would have helped me to have been able to read about others, if it had been positive.

"On TV, you hear all the sad stories about people dying - and that does not help your motivation."

'I wanted to be a pilot'

Vishal is now two years into remission, but said doctors originally gave him a 50/50 chance of survival.

At first they thought he might have chronic asthma but then, as his breathing became worse, they suspected tuberculosis and he was kept in isolation.

However tests confirmed that it was Hodgkin's disease.

He had lymphomas - cancers of the lymphatic system - in his neck and near his heart.

"I was pretty shocked when I found out I had cancer," he said

As a teenager, he was faced with having to make decisions about his adult future - such as having to bank his sperm in case the treatment had made him infertile.

He said: "You do not know what is going on. Your whole life goes on hold.

"I missed out on lots of my growing up. I spent a lot of time in hospital and missed a lot of school.

"And when I was ready to go back I felt that I did not really fit in.

"Before my diagnosis, I had wanted to be a fighter pilot and had chosen my subjects to fit in with that, but that all had to change.

"I stopped growing at 5' 8'' when I started the treatment and because of all my health problems I could not join the forces so I had to think again.

"Now I am doing art - a foundation diploma in design - and I want to become a painter."

'People worse than me'

He said the chemotherapy had been gruelling - sometimes stretching to 18-hour sessions.

He felt sick and could not eat, but said he remained positive by ticking off each session and thinking "one less to go".

"The cancer made me put everything into proportion and learn to appreciate everything.

Chemotherapy
Cancer treatment can affect fertility

"Because of the treatment you feel very sore and numb and you are puking, but I used to think that there were people who were worse off than me.

"There were little babies who were in this pain and who didn't know what was going on and could not do anything about it.

"There is always somebody worse of than yourself."

Dr Ann McPherson, medical director and co-founder of the Dipex site, said the new section canvassed young people on all aspects of their health, from being diagnosed with a serious illness like cancer and diabetes to giving their views on sexual health, relationships, alcohol, smoking and drugs.

"Young people talk candidly of their fears, their worries, their feelings about sex and relationships, their ways of coping when illness strikes and of how health services have helped them.

"These are teenagers first and have an illness second."

Dr McPherson said she hoped that as well as giving support and information to the users the site, which includes videotapes and over 30 testimonies from young people, could also act as an educational tool for health professionals.

Children's author and supporter Philip Pullman agreed.

He said that, although personal testimonies were not a replacement for medical care, that they were an important addition.

"True stories are not the best medicine, but they are nutritious and sustaining.

"They feed the mind with information and the heart with hope and strength.

"Nature and medical science together can do a great deal to help our bodies and minds heal themselves, but the real experiences of others who have been through the same troubles gives us the nourishment that sustains >us in the meantime," he said.


SEE ALSO:
'Tailor child cancer care' call
24 Aug 05 |  Health


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