A young Scots girl who spent years suffering from a mysterious illness before being diagnosed with juvenile arthritis has spoken about the 'loneliness' she feels living with the condition.
Jessica Rhodes, now 12, was just three-years-old when mum Tanya noticed she was tiring easily when walking to nursery.
The youngster, from Edinburgh, was taken to her GP on multiple occasions and underwent numerous tests but to no avail, with answers over her mystery condition proving hard to come by.
Jessica explained: “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."
It wasn't until she developed increasingly unusual symptoms that she was first diagnosed with uveitis, an inflammation in the eye and one of the world’s most common causes of blindness.
After her uveitis diagnosis, Jessica began suffering from severe joint pain, with doctors soon realising she had juvenile arthritis before officially diagnosing her with the autoimmune disease in 2017.
By 2019, Jessica was suffering from intense muscle spasms and could barely walk without collapsing.
She was given a wheelchair to attend school but could only manage short periods due to excruciating pain and tiredness.
Jessica added: "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's mum Tanya eventually had to give up her job and find home-based work to care for her daughter.
The condition has limited the time Jessica has been able to spend with friends - something she admits has left her feeling isolated at school.
“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," Jessica added.
"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."
Jessica has spoken out about her condition as part of Edinburgh Children’s Hospital Charity’s (ECHC) ‘Never Alone’ appeal - which aims to raise awareness of the impact that living with a chronic condition can have on children.
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."
To make a donation to ECHC’s Never Alone appeal, visit: www.echcharity.org/donate.
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