17-year-old Sarah, who has JIA, joins Piping Live! Big Band to fundraise for Versus Arthritis

On Monday 14 August around 150 pipers and drummers will march the streets of Glasgow and play a host of classic Scottish tunes, all while raising vital funds for Versus Arthritis.

Every penny raised will help us fund life-changing research, support services and campaign on issues that matter most for people with arthritis. And none of it would have been possible if it wasn’t for 17-year-old Sarah, who put us forward as the event’s chosen charity.

Being diagnosed as a young person 

Sarah was diagnosed with enthesitis-related juvenile idiopathic arthritis when she was just 13. 

Juvenile idiopathic arthritis (JIA) is when you have swelling (inflammation) in one or more of your joints before your 16th birthday. Enthesitis-related JIA is a type of juvenile idiopathic arthritis where you have inflammation where your tendons attach to the bone (these places are called entheses).  

“I didn't know that young people could get arthritis," says Sarah. "I was shocked about how serious it was. At first, I thought ‘they’ll just give me some medicine and it'll go away’. But unfortunately, it doesn't work like that. I don't think I really grasped how long term it was going to be. It’s [potentially] for the rest of your life.” 

Sarah’s JIA symptoms 

Sarah first experienced symptoms in her back. “I had back pain for a while, which they thought was a sports injury because I played rugby at that point. I went to physiotherapy, and I just didn’t get any better. 

“Then my right wrist started to get really stiff, and I got referred to rheumatology where I got my diagnosis.” 

Nowadays, Sarah takes several medicines and two of them (methotrexate and secukinumab) come in the form of an injection. They help, but her healthcare team are still trying to find the right combination of medicines to control her symptoms of pain, stiffness and fatigue.  

“When my inflammation’s bad, there's periods of school where I would have to go and have a lie down in the middle of the day. I'm so exhausted and I can't fight through it. It can be really frustrating.” 

“Sometimes I can get through the day at school, but that's all I can do. That’s not the way I want to live my life. It can be a big barrier.” 

Young People and Families Service

Living with arthritis can be tough for any young person navigating school, work, and relationships. But we’re here to help, every step of the way.  

If you or a family member under the age of 25 has arthritis, remember you can always reach out to our Young People and Families Service.  

We offer helpful information and support on how to manage your condition. Plus, we put on a range of jam-packed events across our four nations where you can meet other young people with arthritis. 

Sarah joined our Young People and Families Service in Scotland and found it to be a big help.  

That’s why, you’ll often find her making crafty creations at one of our Art Weekends, practicing archery at one of our outdoor residentials, or learning how to navigate adulthood at our Positive Futures events. 

“Everyone can take part to some extent,” Sarah says. “The events are always inclusive. [Plus] there’s always enough time [to] talk about your condition, medication, how you cope, as well as tips and tricks.   

“It’s a safe space to try activities because the other young people are in a similar position, and they aren’t going to judge you.

"They’ve got loads of different groups across Northern Ireland, England, Scotland and Wales too.” 

Playing the bagpipes

There’s nothing like traditional Scottish music. It’s rousing, electrifying and full of foot-tapping tunes - and Sarah thinks so too.  

That’s why, when she’s not at our events or Scouts, you’ll probably find Sarah playing bagpipes in Kilsyth Thistle Pipe Band. 

“I really like the social aspect of the band. It’s like a big family,” she says. “You could be spending six hours with these people a week, so you get to know them well. It really helps with my mental health and lifts my mood.” 

Piping Live! Big Band

Every year in Glasgow, pipe bands come together to take part in a charity march called Piping Live! Big Band.  

“A group of pipers, drummers and drum majors from all over Scotland come together to raise money for an important cause and celebrate traditional Scottish music,” explains Sarah.  

“It’s a great atmosphere and it’s for charity. It’s nice to know you’re doing something good through your piping, and making a difference to people's lives.” 

After last year’s march, Sarah decided she wanted to put Versus Arthritis forward as the event's chosen charity.  

“I emailed Piping Live! Big Band and said ‘This is a charity that's made such a big difference to my life. They’ve really helped me try to accept my condition and cope with it. It’s also helped my mental health just being able to talk to other young people with the same condition. I’d like to help fundraise and make sure they’re able to carry that on.” 

What do you wish people knew about arthritis? 

We know that around 12,000 children under 16-years-old have ever been diagnosed with JIA. But there’s still a lot of myths and misconceptions about the condition. 

“I wish people knew that young people get [arthritis]” says Sarah. “It would [also] be a lot easier if people knew how it fluctuates so much. One day I can cope, then the next thing I might not be able to use my wrist, or I struggle to walk. No two days are the same.” 

We’re here to help  

If you need advice or support, you can: 

• Call our free helpline on 0800 5200 520   
• Chat to our Arthritis Virtual Assistant  
• Join our online community  
• Stay in touch and follow us on Twitter, Facebook and Instagram.