Young people with multiple sclerosis left 'confused' and 'scared' by outdated advice
Current advice for patients is geared at older people, according to charity MS Trust
More than three quarters of young people diagnosed with the disease multiple sclerosis have said they feel 'confused' and 'scared' by the information they are first given after a diagnosis.
The charity MS Trust has said the incurable neurological disease affects far more young people than is widely believed, with as many as 70% of sufferers displaying symptoms before they turn 20.
Zoe, from Wigan, was diagnosed when she was 17:
"I was tired all the time. Most classes in school I was falling asleep in - I was seriously tired. I went to the doctors and they ordered a brain scan becuause they said my symptoms were getting a bit ridiculous. It showed up that I had, like, orbs, a bit like swelling, on my brain. I had to go and have a lumbar puncture and I was diagnosed with either one of two things, I was either going to die within six months or I was diagnosed with MS.
"I thought my life was completely over to be honest. There was nothing out there for us young'uns to tell us what would happen to us. Everyone I was speaking to said they knew somone with MS but they were all 50 or 60 years old.
"It was really scary. I went into my own shell. I was depressed and crying all the time. I remember watching Waterloo Road on TV and there was a character in that who had a brain tumour and I just thought 'Oh My God, that could be me. I could die'. I was scared out of my wits. I was crying every day and I didn't want to speak to anyone. It was horrible but you just have to get on with it, to be honest, that was my only way of dealing with it.
"There wasn't anyone there for me. They were just talking nonsense to me. I'm a teenager, I need them to explain it to me like I'm a young person. I'd leave a consultation with my parents and they'd ask me what they said and then they would have to explain to me what was actually going on."
The MS Trust has now announced it has launched a new Youtube Channel to coincide with MS Awareness Week, aimed at helping young people understand the condition.
MSTV will aim to provide young people with MS, or affected by a loved one with MS with relatable, easy to understand information including testimonials from some of their peers