‘I was in such pain at just 12’

Caitriona Roberts, 26, has suffered since childhood
Caitriona Roberts, 26, has suffered since childhood
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Arthritis is generally considered an older person’s disease, but everyone from children to adolescents can suffer.

“Arthritis” (from the Greek ‘arthro’, meaning joint, and ‘itis’, meaning inflammation) describes a family of musculoskeletal conditions that includes different types and symptoms.

Because there are 200 types of this form of disease, it can be difficult to receive the correct diagnosis quickly.

Osteoarthritis is the most common form of arthritis in the UK, affecting around 10 million people, and it generally occurs in adults who are in their mid-40s and over; it causes damage to the smooth cartilage lining of the joint, leading to pain and stiffness in areas such as the hands, spine, knees and hips.

Rheumatoid arthritis is the second most common form of the condition, affecting 400,000 people in the UK. Here, the body’s immune system attacks joints, leading to pain and swelling. Again, this often begins when a person is in their 40s or 50s, with women three times more likely to be affected than men.

The symptoms naturally vary depending on the type of arthritis you have, but, broadly speaking, you may experience joint pain, tenderness and stiffness, inflammation in and around the joints, restricted movement of the joints, warm, red skin over the affected joint, weakness and muscle wasting.

But, strikingly, in the UK there are around 15,000 children and young people suffering with juvenile ideopathic arthritis (JIA), defined as pain or inflammation of one or more joints for at least six weeks.

This condition is often overlooked and can lead to devastating levels of pain, fatigue and isolation. An arthritis diagnosis can be life-changing and because younger people suffering from the disease are a minority, their struggles are often overlooked, misunderstood or dismissed.

Versus Arthritis, a leading UK charity campaigning for better research and support for sufferers, is attempting to raise awareness of the incidence of the disease among the younger demographic and is promoting self-care advice that can limit, what can be debilitating, symptoms.

The organisation’s young people and families’ service helps to support 10-25 year- olds across the UK, through a range of events, workshops and residentials - a great way for young people to meet others who understand what they are going through.

Caitriona Roberts, 26, a civil-servant based in Belfast, was just 12 when she was diagnosed with Juvenile Idiopathic Arthritis (JIA) and has massively benefitted from the charity’s help. She wants other young people with the condition to know that there is help out there.

Caitriona said: “My ankle flared up when I was 12 and I was told by doctors it was just a sprain. It was very swollen and I was in agony; it was a very sharp, severe pain when you put any pressure on it. My knee became similarly painful and swollen and it became very difficult to walk and do day-to-day things.

“I had been going back and forth to A&E for months and they were baffled. They initially thought it might have been just a cry for attention but I knew the pain was very real.

“I ultimately went to my GP who had trained with experts in arthritis and was able to give me a diagnosis. They told me I had juvenile idiopathic arthritis (JIA). I started with anti-inflammatory medication and topical gels. I’m now getting bi-weekly injections to manage the pain.

“When I was first diagnosed it was a nightmare. I felt like I couldn’t walk, I couldn’t go out, I couldn’t go to school. The pain and fatigue was terrible and sometimes I couldn’t get out of bed. I felt very isolated from my friends, and I wasn’t able to do the same activities. I had a classroom assistant who would write things down for me and this made me feel very singled out when the arthritis had spread to my hands, knees, toes, ankles, elbows, shoulders, jaw, basically everywhere.

“I still struggle with the pain every day - it’s about a seven out of 10 in severity - but I am very used to this now. To avoid isolation and sitting at home alone, doing nothing, you have to weigh up the pros and cons and decide if it’s better to struggle in a job day to day. Luckily I found a role in the civil-service that suits me.

“Versus Arthritis do really helpful self-care classes and going along to them was the first time I was able to meet other young people who suffered in the same way. We learned things like how to breathe through the pain; how to create a plan to get through the day; remembering to use a hot-water bottle in winter or use water-packs to cool a joint that has flared up.

“As a teen, Versus Arthritis take you away on residential weekends, where you learn lots of ways to cope, and that was where I really met other people like me who have since become part of my support network. It’s been very challenging dealing with this disease and at one point I had to have counselling because the pain was getting to me. But with the charity, friends and family, it’s not always doom and gloom, and there are ways to get around things. I’m definitely not defeated.”

Doctor Pamela Bell, a former consultant in pain medicine, and lead clinician for pain services at Belfast Trust, has worked with children and adolescents suffering with arthritis, advising them on self-care.

“Very few people are aware that arthritis can occur at any age. It can occur in pre-school children right up through school age, adolescence and beyond, but because it’s not very common in children it tends to be rather overlooked.

“These children are struggling with pain and with movement and need to be referred on by their GPs for specialist care to deal with the acute inflammatory problems and underlying disease process, because there is much that can be done to prevent long-term deformity and disability.

“They may be prescribed anti-inflammatory or pain relieving medication but this will vary depending on the kind of arthritis they suffer from.

“But we like to teach the principles of self-care because drugs are not enough to address a chronic condition. First of all I advise children and parents to find out and try to understand as much as they can about the condition, learning about the treatments and the names of the different drugs they are prescribed and what they do.

“Then it’s about trying to concentrate on what you can do to limit the pain rather than what you cannot do.

“You should engage everyone around who can help you, family members, a physiotherapist, your doctor, teachers or school friends - it’s important to develop a little support network around you.

“It’s very useful if you can identify what the pain is preventing you from doing that you would really like to do. Try and work out the little steps that you can take that may help you to achieve that goal eventually.

“Then you have to realise that it’s not just about the pain - the pain can affect mood and lead to psychological problems such as depression and anxiety which will need to be addressed.

“We encourage children and young people to be as active as they can be - if it causes their arthritis to flare up then they need to cut it back to perhaps half of the time they are spending on physical activity.

“People experiencing pain often feel isolated, and that is a particular danger for young people with arthritis, that they might not know anyone with the same condition. “This is where an organisation like Versus Arthritis comes in with its child and adolescent programmes that help people to connect with others.

“Versus Arthritis support groups allow young people to meet others who suffer in a similar way and that can be priceless in overcoming isolation. T

“his can empower parents and young people to battle the condition with everything they’ve got.”

l For more information on Versus Arthritis and the support it offers, visit.versusarthritis.org.Versus Arthritis also has a free helpline with a trained team of advisers available from 9am-8pm, Monday-Friday. Call 0800 5200 520.