Too young for arthritis: the kids battling the 'disease of the elderly'
- 25 September 2013
- From the section Scotland
Arthritis is a condition most people associate with the elderly.
But more than 2,000 children and young people in Scotland suffer from the disease.
Lucy is four. Since she was little more than a year old, she's had arthritis.
To watch her playing on the slide in her garden near Dundee, you might not know it.
Arthritis, a swelling of the joints, is not immediately visible - and most people think it is a disease that only comes with age.
But an estimated 15,000 children and young people in the UK suffer from arthritis.
Lucy's mum Jane Lyall first noticed there was a problem one Christmas when they were decorating the tree.
"Any normal baby of that age would be trying to take the decorations off, but she just sat down," she said.
"She went from being a normal happy baby to a little girl who couldn't move her neck. Her fingers were swollen. She went from crawling to not being able to move.
"She couldn't roll over in bed, we had to physically turn her over in bed at night, and she couldn't sit up by herself.
"My initial reaction [when she was diagnosed with arthritis] was that, 'oh, that's fine, we'll just give her some ibuprofen and she'll be ok', not realising how complex the condition was.
"Little did we know what journey we had in front of us."
Lucy was lucky. Her condition was caught early. Medication - including breakthrough 'biological' drugs - help control it, and her toys are specially designed to help with her physiotherapy.
One is a special type of play dough known as theraputty, which exercises the joints in her hands.
But juvenile arthritis is relatively rare, making it difficult to spot. Some children go years without being diagnosed.
Paul McAlpine, from Edinburgh, first got symptoms when he was six-years-old. It took until he was eight for him to be diagnosed.
"I'd gone to five different hospitals all over Scotland," he said.
"Nobody could tell me what it was, until I went to Yorkhill Hospital, and they knew exactly what it was as soon as they saw it.
"So there was a large lack of knowledge about what arthritis was in young people until recently."
Paul is one of a group of teenagers from across Scotland who have come together through the charity Arthritis Care to form a group called Joint Potential.
Together they have made a film, Too Young for Arthritis, about living with the condition.
It has been specially screened for doctors, healthcare staff and politicians in the hope of raising awareness.
Among them is Carrie Thornber from Leven. Now in her twenties, she has already had several joint replacements and uses a wheelchair.
She first noticed symptoms when she was 11.
"I remember it being around the end of my first year in high school. I wasn't really diagnosed until a year later," she said.
"I remember being in and out really quickly with the GP. They didn't really spend much time.
"This was about to be something that was going to dramatically change my life, and I was in and out in five minutes, and all I was given was a wee pamphlet."
Nicole Guemar, from Glasgow, was a baby when she first got symptoms. Her mum took her to the doctor, concerned that she cried constantly.
She was told that Nicole was probably just a "difficult child".
"They thought that was normal because I was a baby, but [my mum] was like no, this is not normal, she's crying far too much.
"Eventually my knee cap had actually turned 90 degrees, and they knew then that that wasn't normal, so they started running tests. That's when they found out I had juvenile arthritis."
The youngsters hope by sharing their stories, they will alert more people to the condition.
But medical specialists insist things are already much improved in Scotland.
Dr Jo Walsh, a consultant paediatric rheumatologist, says strides are being made.
"This is a really exciting time for paediatric rheumatology and for young people and their families.
"Nationally we have a network that allows us specialist teams throughout Scotland with expertise in the recognition and early diagnosis of young people with arthritis," she said.
"Early recognition of a young person with arthritis in the past perhaps has been difficult, because the public's perception is that children don't get arthritis, and that's clearly not the case.
"Secondly, health care professionals have perhaps not had the same education and training that we've been able to provide through our network.
"Early recognition and prompt treatment that is aggressive will lead to better treatment for our young patients.
While the future for children like Lucy is uncertain, with new drugs and better training, treatment is getting better all the time.
But dealing with the physical symptoms isn't the only issue. Deni Munro says being a young person with arthritis can be an isolating experience.
"I don't think that people outwith my friends and family understand at all, and sometimes I don't even think my friends and family understand it.
"Raising awareness that young people have this, it's not an old person's disease, would help. It has to change, the perception has to change."
And change is what these young people hope sharing their stories on camera will help bring about.