Young people living with arthritis

Ben's story

In many ways, Ben is like lots of 14-year-olds.

He loves spending time with his loving family and friends, enjoys school and takes part in sports when he can.

One of his main passions is supporting local football club Millwall, despite his mother Kerry’s objections, as she supports their arch rivals Charlton Athletic.

But unlike many other people his age, Ben has arthritis.

He has juvenile idiopathic arthritis (JIA), which means his immune system is overactive and attacks his joints.

The condition causes Ben pain, especially at night and first thing in the morning.

But thanks to the care and attention of those close to him, Ben is still able to do many of the things he enjoys.

Diagnosis

Ben was diagnosed with JIA in December 2013, eight months after he was first taken to a doctor.

After diagnosis, Ben was placed on a drip of steroids for four hours a day, from Friday to Sunday for two weeks in a row because his arthritis had become so severe.

The impact of JIA can be severe on joints if left untreated and so it’s important that appropriate treatment is found and followed quickly to try to get the condition under control.

Ben is currently on methotrexate and etanercept, and he has previously taken steroids. Sadly, Ben has had some side-effects to methotrexate which has meant that the dose has had to be reduced.

Coping with symptoms

While Ben's health has improved since the toughest times, he still has inflammation. In the past couple of years, Ben has experienced a lot of pain, which has affected his sleep. The pain did recently go completely, but it has unfortunately returned.

Mum Kerry said: “Some of the worst times have been at bedtimes, when Ben has been in real pain. There isn’t a lot I can do apart from say, ‘think positive thoughts’, and try to use distraction techniques.

“It’s been horrible at times."

Kerry said that while it can be tough, encouraging young people with arthritis to do their physiotherapy and exercises such as swimming is important.

Ben said: “I try to go swimming twice a week, even if it isn’t for very long."

Big step forward

Recently Ben went shopping with his Mum and came home with a pair of new football boots, a purchase which had particular significance for the football-mad teenager.

Ben was sadly unable to use his last pair of football boots because of his arthritis, and he's grown out of them. But he's already been able to put his new pair to good use.

He said: "I'm really pleased to be able to join my school friends in PE, especially as we're playing football and I've not been able to join in PE since mid-year seven.

"My first pair of boots, which I never got to wear, were size four. I've had to buy a new pair in size 10. I've even scored a couple of goals. After some more physio my next goal will be to go on a course to become a referee."

Watching your child struggle with their health isn't easy for any parent. Mum Kerry said: “After diagnosis, it may still be a long journey.

"I remember thinking 'it'll all be better in a week or two'. But with most medications, you have to allow three to four months.”

Kerry has this advice for parents in a similar situation: “Keep pushing. It's hard, but you need to keep pushing for answers. “Parents need to be able to let off steam. I think it's useful for parents to find a link to other parents of children with arthritis. Other people just don’t understand.”

Helping to carry the load

Ben, who lives in south-east London with his parents and younger brother Adam, has a positive outlook. He said: “I've got really nice friends.

“I've told them about my arthritis and they're very understanding. When my arthritis is bad, my friends carry my bag for me.

“I love playing football, but sometimes my arthritis won’t let me play. I have friends over and we watch films together instead.

“I enjoy school. It’s boring when I have to stay at home. My form tutor has moved my classes downstairs so I don’t have so far to get around. If I need to go upstairs, there's a lift. I haven’t missed any days this term. I'm very proud of that.

“I'd like to go to university. I'd like to be a football referee when I'm older.”

Claire's story

Clare can't remember a time in her life when she didn't have arthritis.

She was diagnosed with juvenile idiopathic arthritis (JIA) when she was just two years old.

But that hasn't stopped her from completing a degree in textiles at the University of Wolverhampton, travelling around Australia and working at a hospital and a university in London.

Growing up

Clare said: "I was diagnosed just before I turned three. I didn't really have a chance to react to the diagnosis because I was so young. It's all I have ever known, I don't remember not having arthritis.

"For the first 16 years it was on and off and I'd have flare-ups.

"I didn't know anyone else with arthritis when I was growing up. When I went for hydrotherapy, it was always only older people in the session.

"But I didn't personally see my arthritis as a weird thing because it's always been there. Someone who gets it late in childhood might find that quite difficult.

"One of the main things is to let young people with arthritis know that, while it's a bit different, they're not alone."

School

One of the main problems Clare experienced growing up was a lack of understanding that young people can have arthritis.

Clare said: "As a child, I didn't have a lot of movement. Some teachers were good because my mum went in and spoke with them. But some weren't so good.

"I struggled with PE and some teachers said: 'Come on, you're fine'."

Travelling

After university, Clare decided to spread her wings and travelled Australia for a year.

"I was going to be in the outback for six months. I had to make sure I had enough medication so I could deal with any potential flare-ups before I could get to a doctor.

"The main consideration was researching where I was going to find out where the nearest medical facilities were and how I'd get help if I needed it.

"My arthritis wasn't too bad and I didn't have a flare-up when I was away, so I only took anti-inflammatories. The warm weather helped. I did cleaning jobs and some fruit picking."

Clare would encourage people looking to travel to be prepared and research restrictions in different countries. She said: "I'm on methotrexate now. If I went to Australia again, I'd have to be more prepared.

"When I went to New York, I needed a doctor's note to say I needed to carry my medication with me, because of the extra security measures."

Talking to employers

Back in the UK, Clare unfortunately suffered a nasty flare-up in 2012. She'd recently moved house and her new doctor didn't know her history. It took six months to get appropriate treatment.

Flare-ups can understandably affect Clare's mood. She said: "When it was getting bad, it was making me depressed.

"It forced me to talk about it at work. They were really supportive. They did anything they could to make it comfortable."

Talking about your condition with employers is something Clare recommends.

She said: "There have been jobs where I suffered in silence. Then as soon as I told my employers about the issues, they helped me, for example, with a leg rest, regular breaks and being able to get up and go for walks."

Happy ending

Clare works in London on the South Bank of the River Thames in a university.

Clare got married to Paul in a beautiful ceremony in Staffordshire where she grew up, and the happy newly-weds then enjoyed a fantastic honeymoon in Bali.

David's story

David Lewis has a lot to be proud of.

He's represented his country at a major international sporting event; addressed dozens of politicians at the Houses of Parliament; gained a university degree; worked for the BBC; and has made a fantastic start to a book he's writing about his life.

He's done all this with humility, dignity and determination, having had more than 30 operations due to his aggressive systemic-onset juvenile idiopathic arthritis, which he’s had virtually all his life.

Diagnosed at a young age

David was diagnosed with arthritis at the age of two.

One day when he was playing in his garden, he started limping and developed sore knees.

After about a month, David was taken to the doctors. The doctor put it down to nothing more than a typical two-year-old who had lost his balance a few times and had fallen over.

A couple of weeks later David woke up unable to move and had pain all over his body. His family realised there was something seriously wrong. David was taken back to the GP and was then sent to hospital.

David and his family endured two months of various tests, including for cancer, before he was diagnosed with arthritis.

School and university

One of the things David is most proud of is that he kept up with his schoolwork during secondary school and college.

Between the ages of 11 and 17, David had both hips and his knees replaced, as well as major surgery on his neck. With his family's support, David worked hard and gained six good GCSEs at grade C or above.

David, who's 31, said: “School was tough. There were times when I was in hospital for two months at a time and it was difficult going back and getting back into a peer group. I’m proud that I was able to catch up with my schoolwork when I was in hospital."

"My parents were always supportive and they said: ‘Despite this, you've got to do the work and get as many qualifications as you can’.”

After gaining two Bs and a D at A level, David secured a place at the University of Central England, now called Birmingham City University, to study media and communications and to specialise in radio.

Before starting his final year, he became seriously poorly. He had to take a year out of his studies but graduated with a 2:1.

Work opportunity

After university David worked at Birmingham City Council in the social services and health department for just over three years.

When an opportunity came in May 2009 to work as a researcher and broadcast assistant for BBC WM, a local radio station, David grabbed it with both hands. Working in the media, and in radio in particular, had long been David’s dream.

Sadly, after just one week in the role, David suffered a fall on his drive. Due to the amount of steroids he's taken over the years, his bones aren’t as strong as they could be, and he broke his leg.

After the fall, David was in bed for nine months and he spent a total of 355 days in hospital.

The BBC offered David the chance to temporarily suspend his contract so that he could resume it when he was well enough. “I didn’t collect any sick pay from the BBC,” David said. “I wanted the chance to work there and to prove myself."

After his hospital stay and recuperation, David succeeded in returning to the BBC, where he still works.

Voluntary work

Despite his busy schedule, David finds time to do voluntary work for Arthritis Research UK. Helping people with arthritis, especially young people, and showing what can be achieved despite living with the condition is a passion of David’s.

He's spoken about arthritis, and the impact it can have on young people’s lives, at schools and colleges, rotary clubs, social clubs, to medical students and on fundraising days.

David recently helped the charity launch its manifesto ahead of the 2015 General Election, and he spoke at the Houses of Parliament in front of 40 MPs and medical leaders.

He said: “It was a great experience and I was very honoured to be asked. I was very nervous.”

David's also passionate about sport. He's watched Birmingham City all his life and has been playing powerchair football for six years.

David plays for Sporting Club Albion, which is affiliated with West Bromwich Albion. He's also represented England at a major international tournament.

David said: “It’s difficult to put into words how much I enjoy playing football. To be able to play football is a dream come true.

"I'd never played sport before powerchair football, not even in the playground at school.”

David has trained on several occasions at the English FA’s national training centre, St George’s Park in Staffordshire, and the side is preparing for the World Cup in 2016.

All of these achievements and experiences are filling the pages of a book David's writing about his life.

It was during one hospital stay that David started to write his story. He's so far written more than 120,000 words and he’d love to have his book published.

“I've achieved quite a bit and have talked about my achievements," David said.

"I'm fortunate that I've always had great family and friends and I've always made the most of life.”

Simon's story

Simon, aged 21, has never known life without juvenile idiopathic arthritis (JIA). He was diagnosed with the autoimmune condition at the age of three.

He had to have a lot of time off school and spend many hours in hospital. But now, Simon is dedicating his future to help other people who have the condition.

A difficult start

“JIA is an invisible condition,” Simon said. “I look like any other healthy young adult; however, like many other young people with long-term conditions, I have learnt to disguise the condition well and get on with my life.

“Growing up, the pain was really bad. On top of the swollen and inflamed joints, I couldn't take part in usual day-to-day activities and often had to use a wheelchair to do simple things such as going shopping.

"For as long as I can remember, pain has been a daily part of my life, and something you get quite used to.”

As well as JIA, Simon also has Crohn’s disease, fibromyalgia and joint hypermobility (where the joints over-extend). Simon needed surgery aged 11 to secure a dislocated hip which was caused in part by hypermobility, which affects many people with JIA. And taking methotrexate gave him sickness every weekend for five years until he was moved onto a biological therapy called etanercept.

Success story

But despite these difficult experiences, Simon didn’t let the disease impact on his life chances. Through hard work and determination, he gained 16 A*s and As at GCSE, and his education has continued to be a success.

After gaining two As and a B in his A levels, Simon opted to study biomedical sciences at The University of Manchester, where he’s studying the disease he has lived with since he was three.

“The experience of living with JIA has sparked a curiosity and desire to understand the wonderful biology of humans, and to improve the experience that children, young people and adults have once they've been diagnosed with a long-term condition such as arthritis,” Simon said.

“I often dreamed of making a difference but never thought that I would be actively working with musculoskeletal researchers to change tomorrow’s healthcare so early into my career.

"It really is quite exciting."

Helping to influence research areas

Simon is now embarking on a career researching into the condition which has affected him from a very early age.

As well as working on his degree and applying for a postgraduate doctorate course, Simon has been working hard on one of Arthritis Research UK’s clinical studies groups (CSGs).

CSGs are instrumental in shaping the questions and areas of focus of research to help increase the understanding around the disease, as well as encouraging more young people to take part in research.

This experience has helped Simon develop an even greater understanding of research in biomedical science.

He said: “The work I've been doing with the CSG and other patient groups has encouraged me to pursue a career in research.

"I'm currently building up my portfolio of evidence and will be applying for PhDs.”

Simon is currently spending a year in the world of industry and his placement is with a pharmaceutical consultancy company in Cheshire.

Developing apps

Simon is also working with a team of researchers and healthcare professionals on a project to look at the potential for an app which helps young people with arthritis.

Among other features, the app will:

  • help people organise medication regimes
  • remember appointments
  • provide physiotherapy guides.

Simon said: “We want to make sure that the app is developed to the highest of standards, ensuring that we generate the required evidence needed to receive funding and approval into the NHS.”

To feed into the project, Simon has launched a survey with a colleague from Arthritis Care Northern Ireland, Catherine Wright. The survey is identifying the top concerns of young people with arthritis.

Simon has been successful in having oral presentations accepted for both the survey and mobile app at the European League Against Rheumatism (EULAR) annual congress, a large european conference attended by doctors and researchers from across Europe.

Everything has led to this point for a reason

Simon says that without what has been at times a very gruelling experience with arthritis, he might not be at this exciting point in his career path.

He said: “My placement year is almost over, and I am already thinking of my final degree year and PhD applications. Time certainly seems to go faster as you get older. I absolutely love the work that I’ve been doing recently. It has been a steep learning curve, but I wouldn’t want it any other way.

“Everything has led to this point for a reason. Going back to being an insecure and uncertain 10 year old, I could never have dreamed where my experience was going to lead me.

“Adolescence is challenging at the best of times. But the added impact of a long-term condition like JIA really takes its toll on young people and their families.

"Over the past couple of years, I've presented talks to young children and their parents, offering them support and showing that there's a light at the end of the tunnel. Let us keep sharing the message and raising awareness that children do have arthritis, but it doesn’t mean that their lives shouldn’t be lived to the full."

Coping with fatigue

Simon has also experienced a lot of fatigue. He said: “It's much more than just feeling tired.

“Know what you can and cannot do, and be open with your family, friends and doctors. Tell people how you are feeling – never struggle on your own.”

Talking can help

Some young people choose to keep details of their condition to themselves, which is entirely up to them. But for Simon, talking has helped.

“I've always found that it’s better to speak about my condition," he said. "People will never be able to offer support or understand if you don’t tell them how you feel.

"Friends, family and colleagues are always understanding, especially if they know your capabilities and limitations."

A focused attitude

Simon has always had a focused attitude and approach to life that has served him well.

He said: “A lot of young people with long-term health conditions have to grow up quickly. I certainly had to grow up a lot quicker than other young people my age.

"I thought having to put in lots of work at home was just part of having these conditions, but I was driven by the goal of achieving my dreams, despite the many hurdles and obstacles in my way.”