“Invisible” illnesses in focus

Sophie Ainsworth hosting her invisible illness workshop at Alder Hey Children's Hospital. (s)
Sophie Ainsworth hosting her invisible illness workshop at Alder Hey Children's Hospital. (s)

A Pendle student has staged the first workshop for her newly created “invisible illness” support group at Alder Hey Children’s Hospital in Liverpool.

Sophie Ainsworth (17) who is a student at Nelson and Colne College, formed the group after she was diagnosed with the auto-immune disease Lupus, aged 15.

Sophie has been invited to speak at this year’s Royal College of Paediatric and Child Health Conference, and also to attend the International Children’s Advisory Network Summit in Barcelona in June.

She said: “Lupus can cause a huge variety of problems, with daily symptoms such as breathing difficulty, joint and muscle pain, nausea and fatigue.

“The problem is, despite often feeling awful, I look healthy.

“This can cause a lot of confusion and has often led to people not understanding my condition.

“Whilst at school I was made to feel lazy, told I was ‘skiving’ and generally made to feel really bad about a situation which was already stressful enough.”

Inspired by her own experiences, Sophie decided to do something to help and offer support to other young people who find themselves in similar situations.

She continued: “The aim of the first workshop day was to come up with lots of ideas of ways to improve the quality of support that young people receive from their schools and colleges.

“The workshop was well attended by sufferers of invisible illnesses, their parents, doctors and teachers – all of which helped provide different insights and ideas as to what needs to happen and how we can put our thoughts into positive action moving forward.

“I want to help other young people like me as it’s vital that we have the support we need to achieve our potential in school.”

Kevin Weston, Chairman of Lupus UK said: “It is a huge challenge for students when they have an illness to cope with education, teachers and classmates.

“The key is communication and Sophie’s project will provide detailed information for schools, enabling thousands of students with hidden illnesses, such as Lupus, to lead a positive life and enjoy their education.”