Page last updated at 00:06 GMT, Saturday, 28 March 2009

'I felt alone with my MS'

By Jane Elliott
Health reporter, BBC News

George Pepper
George set up the new site to help young people network

George Pepper was just 22 when doctors told him he had multiple sclerosis.

He and his family say that in a strange way, they were relieved by the diagnosis of MS - they thought his blurred vision and continuous vomiting were the probable signs of a brain tumour.

In the first 15 months after diagnosis George had seven relapses.

Symptoms ranged from slurred speech, difficulty walking and losing feeling in his body - this was so severe he could not feel temperatures and after some nasty burns had to resort to testing bath water by drinking it.

Peer support

He knew little about his condition, which affects the central nervous system (the brain and spinal cord), but as he was told it was mainly a disease diagnosed in young people he expected a lot of peer support.

However he says this was not the case. "I found it very difficult to find young people like me. All the people I met at the hospital clinics people were far older.

There are a number of tricky issues where sharing experiences can help such as how to tell a date that you have MS?
George Pepper

"Peer support would have been a great benefit."

So George from Leeds decided to help fill the gaps he experienced - setting up a website 'Shift. ms.' to tackle the issues that young people like himself were concerned with - including dating, sex, starting a family, work and long-term-relationships.

Keeping active

Today George, now 26, is reasonably fit and well, although he does get easily fatigued. He is leading an active lifestyle and recently returned from a skiing trip.

And he said the website was somewhere he hoped others would, like him, be encouraged to test their boundaries.

George Pepper
George knew little about MS when diagnosed

"The website is somewhere for people with MS to find advice and to be encouraged to do all the things they have always done.

"It is in your 20s and 30s that you are making decisions about your career, relationships, and the future, so having peer support is a great comfort and a practical benefit.

"There are lots of things you need to think about, such as future children - I was advised to bank my sperm because of a slight risk from the chemotherapy I was having to treat my MS.

"There are also a number of tricky issues where sharing experiences can help, such as how to tell a date that you have MS.

"We also have a section on the website called 'sex drugs and rock 'n' roll' - where people can discuss things that they perhaps do not want to ask their doctor, such as 'can I continue taking my ecstasy now I have MS?"

And because the site is aimed specifically at the young it uses social networking sites and encourages people to upload their own videos.

Aimed at the young

Dr Simon Shields, a consultant neurologist at the Norfolk and Norwich University Hospital and a trustee of 'Shift.ms.' said the site would fill a gap for many young people - dealing with particular issues they might have.

"MS is the most common neurological condition that we diagnose in young people and the age of diagnosis average at about 30.

"These are young and active people who are generally well and want to lead their lives, and they can do because they have remissions. Their life can continue with some adjustments.

George Pepper
The website is aims to be interactive

"One major benefit of this site is that it is designed with young people who are using the internet a lot and it is fun to use.

"It also has the ability to create contacts so people can interact in a way that other websites cannot.

"MS is fairly well supported medically, but if you have a problem or feel embarrassed the access is often easier to talk to someone who is going through it.

"I have learnt a lot from patients who come and tell me about their experiences and keeps me current - sometimes more than medical journals."

Jayne Spink, of the MS Society, added: "There has been a distinct lack of appropriate information and support for children and young people affected by MS, and the MS Society has worked hard to improve this.

"It's good to see 'Shift.ms' exploring the niche of social networking."

George said he hoped that young people using his site could link up with other people with MS who live nearby.

"Much of the website is user-generated and people can contact others in nearby areas with similar interests.

"It's also a great resource for those with MS to pass on to friends and family."



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