On World IBD Day (2016) Evie launched the Medical Needs Guidance for Schools in partnership with Leeds City Council which aims to support children in school who have complex health needs.
When I was finally diagnosed with Crohn’s Disease in 2013, because I was only 8 years old it could have been very difficult for me and my family to understand, but my Specialist IBD Nurse Sally gave my parents an information pack from Crohn’s and Colitis UK and we immediately stopped feeling alone.
Because of the support we felt, I decided I wanted to help other people with IBD. It can be an embarrassing illness as well as an invisible one. I think raising awareness will help other people understand and make it less embarrassing to talk about.
It’s a real honour to be named a Community Champion, but to me everyone who fights this illness on a daily basis is a champion. If I can just help one person I would feel proud.
I think the most important in my new role as a Community Champion is to continue to raise awareness. I'd like to do this in schools especially to stop young IBD sufferers from feeling alone. I want them to know that someone is there for them. I'd really like to help others.
I’m very lucky to live in ‘Child Friendly Leeds’ and I have been working with Children’s Services raising awareness in schools for children and young people with complex health needs. I especially want to focus on attendance for those who won’t achieve 100% attendance but to be recognised for their resilience and strength.