ECHC has today launched its new ‘Never Alone’ appeal which aims to raise awareness of the impact that having a chronic condition and multiple hospital visits can have on a child.
The campaign is fronted by 12-year-old Jessica Rhodes who has juvenile arthritis and complex autoimmune issues. Jessica was just three years old when mum Tanya noticed she was tiring easily when walking to nursery. Despite numerous GP visits and lots of tests, no one could find anything medically wrong.
Over the next few years, Jessica developed increasingly unusual symptoms and was referred to Rheumatology at Edinburgh’s Children’s Hospital where doctors battled to get things under control.
By 2019, she was experiencing intense muscle spasms and could not walk without collapsing. She was given a wheelchair to attend school – but could only manage short periods due to pain and extreme tiredness. Mum Tanya had to give up her job and find home-based work to care for her.
I have arthritis in my knees, ankles, shoulders and hands. But the inflammation isn’t only in my joints; my eyes and skin are affected as well. And it really hurts.
- Jessica
Jessica said: “I saw so many doctors. I didn’t know why I was getting ill all the time, and why I had to have so many different tests. It was quite scary. Eventually they discovered that I have arthritis, uveitis and Raynaud’s disease. I have arthritis in my knees, ankles, shoulders and hands. But the inflammation isn’t only in my joints; my eyes and skin are affected as well. And it really hurts.
“I need pain relief most days. I’ve lost count of the number of injections I’ve had. I have monthly infusions and regular steroid injections and I have a methotrexate injection every week. It makes me feel sick and rubbish the next day, but I know it helps make me less sore all the time.
“It can be lonely having a long-term illness. I have had to miss quite a lot of school for appointments and treatments at the hospital. When I was in Primary 5, I had a lot of complications from my condition. I was in a wheelchair and couldn’t go to school for a long time. I missed school. I missed being with my friends and teachers.
“I try to join in all activities with my friends. Sometimes I can’t because I’m in too much pain and that’s really frustrating. Sometimes my family has to cancel our plans because I’m too ill to go out.
“I love music and I really enjoy singing in my choir. But I had to stop playing the cello because holding it hurt too much and I’ve missed a lot of choir practice too. I love playing basketball but sometimes it means I’m in pain for days afterwards.
“When I come to the hospital, the ECHC team are on hand to make sure I’m never alone. At the worst points, they have really supported me and helped me feel less negative about coming to hospital. They listen to me, understand how tough things can be and make sure I have fun.
“The ECHC Hub at the hospital is a great place to go and relax after an appointment or treatment. I’ve also made friends and even been on outings with the team. It’s not so lonely with them beside me.” – Jessica
