Fifteen-year-old Rosie was diagnosed with juvenile idiopathic arthritis (JIA) when she was nine. But two very important hobbies help her feel better – both physically and emotionally.
For Rosie, one of the best remedies is swimming. She enjoys two or three half-hour swims every week. Rosie said: “When I'm in the pool, I feel weightless.
“Swimming is a great exercise for people with arthritis, it’s not straining the joints.”
Rosie's mother, Joanne, said: “Swimming has been fantastic for Rosie physically and emotionally.
“The difficulty was finding a pool. The water is warm, it's 32 degrees.”
Another passion in Rosie’s life is music. She's reached grade five in both the piano and trombone – a fantastic achievement.
The arthritis affects her fingers and wrists, so Rosie uses a lightweight, pink, plastic trombone instead of a tradition heavier model.
Rosie said: “It sounds really good, I was quite surprised.
“Music makes me feel happy and using my fingers to play helps with my arthritis.”
Lack of awareness
Many people are unaware of Rosie's condition and find difficult to understand. JIA is often described as an invisible condition – many of the symptoms can't be seen by other people.
Symptoms can also come and go and can be more severe in some people than in others. This can make it difficult to appreciate how it affects young people’s lives and what needs to be done to help and support them.
Rosie and her family have worked hard to tell people how Rosie’s arthritis affects her physically and emotionally.
Rosie’s condition has meant that she's needed a lot of time off school, but she has been able to return full time this term. This is something which Rosie and her family are rightly very proud of.
Mother Joanne said: “The school didn’t seem to be able to cope with the fact that Rosie’s condition is variable."
Joanne advised: “Find out who your local authority inclusion officer is. There's one for each school. We also talked to our local MP to see if she could help.
Rosie said: “At the moment, school's really difficult. It's not adapted for anybody with mobility difficulties."I save my energy for the things I really want to do."
“My condition makes me very tired and I struggle to find energy to do the things a normal teenager would. I have to be careful how I use my energy and save it for the things I really want to do.”
She said: “My friends are really good and understanding; others don't understand so much. The teachers are quite varied. Most are very good though."
But Joanne said: “Rosie loves going to school and finds meeting friends there very important.
“We've employed a maths tutor. Rosie did a maths exam recently and she did very well."
Good team approach
Rosie is treated in Sheffield, and her mother Joanne is very pleased with the treatment she gets there.
Joanne said: “I think finding the right hospital where she's supported has been very important.
“What has been really good about Sheffield is that the consultant, the physiotherapist and the occupational therapist all work really closely together.
“The good team approach is significant.”
Rosie has also had good support from a psychologist at Sheffield. Joanne said: “Out of all of the things provided to Rosie to help her, the psychologist was especially helpful.
“Rosie found it difficult to express how she was feeling to the consultant and to the team. The psychologist helped her to work on articulating her views.”
Effects on family life
The past year has been particularly tough for Rosie and her family.
Rosie has a younger brother and sister, and this companionship is nice for her, especially as she spends so much time at home. But it's challenging for Rosie’s parents.
Joanne said: “They feel that she's the favourite child. She's not in school, she's with me.”
“Rosie’s schooling is the most stressful thing. I'd advise parents to use the local parent partnership.”
“Every area will have a partnership. They are a good place for them to go to. They can act as an advocate.”
Joanne recommends that parents of young people with arthritis investigate what financial support they might be entitled to.
“We use the Disability Living Allowance (DLA) to pay for Rosie’s swimming and tutors.”
Rosie had this advice for young people with arthritis: “Remember when you're in a flare, there are better times to come and you will get out of it!"Remember, when you are in a flare, there are better times to come."
"The side-effects of medication can be horrible, but the overall benefits completely outweigh the disadvantages, although they can seem nasty at the time."