An Edinburgh young person living with juvenile arthritis and complex autoimmune issues is raising awareness of the loneliness of living with a chronic condition for a new charity campaign.
Jessica Rhodes, now 12, 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 the Rheumatology Department at the Sick Kids where doctors battled to get things under control.
She was diagnosed with uveitis – inflammation in the eye and one of the world’s most common causes of blindness. Because of this and her joint pain, doctors began to talk about juvenile arthritis.
Over the five years since being diagnosed, Jessica has experienced numerous appointments and in-patient stays, medications, invasive procedures and joint injections, and very few days free from pain.
By 2019, Jessica 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. Tanya had to give up her job and find home-based work to care for her.
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. I have tried lots of different medications, some helped, some didn’t. Some gave me mouth ulcers and made it hard to eat.
“Eventually they discovered that I have arthritis, uveitis and Raynaud’s disease. At the time, I had no idea what any of that meant and I felt very confused. 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.
“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.”
Jessica is now the face of Edinburgh Children’s Hospital Charity’s (ECHC) new ‘Never Alone’ fundraising appeal which aims to raise awareness of the impact that living with a chronic condition can have on children and raise funds to support them throughout their hospital journey.
Jessica added: “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.
“Sometimes I worry about what it will be like when I’m older, and if it will get worse. I worry what that might mean for my future. But arthritis and my other conditions aren’t the most important part of who I am, and I will work hard and persevere to do the things I want to do.”
As part of the new campaign, ECHC carried out a survey of parents and carers whose children have long term health conditions. 77%* said that their child’s health condition makes them feel lonely.
The survey showed that missing out on social life and activities was the main cause of loneliness for children with health conditions (29.2%), with missing out on school and education also stated as a key reason (24.6%).
Pippa Johnston, Director at ECHC, said: “Jessica will always have to deal with her arthritis. And sadly, she’s not the only child who suffers from a long term, chronic condition.
“The hospital sees 110,000 children and young people every year, many of whom must attend on an ongoing basis – over weeks, months and years. It can be a lonely experience and this loneliness can have long term effects on a child. We have an opportunity to change that.
“We’re asking the public to help children like Jessica through their hospital journeys. Donations can fund marvellous magicians, dancers and musicians to visit children at their bedside and in isolation; arts and craft workshops and the running of our youth group so children can make friends; and film screenings, garden play sessions or baby sensory classes to bring families separated through hospital admissions together again.
“We rely solely on donations to be able to do this. Please consider making a donation so Jessica and other children like her never have to feel alone. Thank you.”
To make a donation to ECHC’s Never Alone appeal, please visit:
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