On World Health Day we hear from 2019 Legacy Award recipient Ezara-Mai. Ezara-Mai is a committed and tireless advocate for young people. She believes that every young patient should have a voice.
Ezara-Mai is creating a legacy for children, young people and their families across UK and internationally, who are experiencing genetic illness. By raising awareness and increasing learning in professionals, and the wider public she is building a future for high-quality genetic research, aiming to improve treatments and services. Here is her story.
Most of my childhood years I have spent in hospital receiving care for my extremely rare auto-immune condition called Juvenile Dermatomyositis (JDM) which affects the muscles and skin and can cause a range of symptoms, the worst of which is extreme muscle pain. I have been a patient of Great Ormond Street Hospital for nearly eight years and visit the hospital regularly.
Great Ormond Street is one of the leading children’s hospitals in the world. They receive 237,908 outpatient visits and 43,218 inpatient visits every year (figures from 2018/19). Most of the children they care for are referred from other hospitals throughout the UK and overseas.
Whilst being a patient of GOSH I have been a member of the Young People’s Forum. The forum was created to make sure that GOSH isn’t just seen as a ‘Children’s Hospital’ – young people need to be represented too, and that’s why the Young People’s Forum is so important! The YPF have a strong voice in helping to improve the experiences of teenage patients who are treated by GOSH. We use our own experiences to guide and support the hospital. We meet six times a year to discuss what we think the hospital should be acting on get updates on how our views and opinions have impacted care and services because I believe that every young patient should have a voice.
I started raising money for Great Ormond Street Hospital to give back to them and to help children like me in the future. So far, I have raised over £16,000 and my aim is to raise £100,000 by the time I am 21 for GOSH. I am also committed to raising awareness about genetic illnesses and their treatments. I share my experiences with geneticists, media companies and the NHS to drive change. In 2017 I connected with a genetics researcher who was keen to create a child friendly animation to explain the importance of having your genomes tested. I helped with the editing of the script to ensure it was understandable for a child and I was the voice over for the animation.
On 7 April 2020 it is World Health day, this is a day to celebrate the incredible work of all medical workers and remind world leaders of the critical role they play in keeping the world happy and healthy. Nurses and other health workers have never been needed more than they do now, they are at the frontline of COVID-19 response. They are risking their own health and lives to provide high quality treatment and care. Without nurses and doctors, there would be no response. Please take this opportunity to praise the dedicated work of nurses and doctors, especially during this unprecedented period.