Working with young people, health professionals and educators to improve support for those with invisible illnesses
Diagnosed with Lupus aged 14, Sophie Ainsworth experienced pain, breathing difficulties and fatigue that made it difficult for her to concentrate in school lessons and affected her attendance. At school, Sophie experienced an unsupportive environment and a lack of understanding of her illness. Lupus is one of a range of invisible illnesses which, while causing a range of symptoms, are not immediately apparent to others.
After leaving school, Sophie was determined to ensure that others in education with invisible illnesses were better supported. With the help of Alder Hey Children’s Hospital, Sophie brought teachers, young people and healthcare professionals together to develop resources for school staff, helping them better support those in education with a range of invisible illnesses.
Sophie is the driving force behind RAiISE (Raising Awareness of Invisible Illness in Schools and Education), developing education resources, seeking to empower and support young people with invisible illnesses, fundraising and speaking at events, schools and colleges. The aim of RAiISE is to “make sure that every nursery, school and college gets it right,” says Sophie’s mother, Sammy.
Looking to the future, Sophie hopes to develop resources for adults with invisible illnesses, and to involve more young people with RAiSE. “She’s definitely got long-term plans,” says Sammy.