What is CHD, why raise awareness?
Congenital Heart Disease is the no.1 birth defect with complex CHD affecting 1 in 125 babies born in the UK, ‘congenital’ meaning present from birth. Those born with complex CHD often have multiple heart surgeries at a young age, often carrying on into adulthood with continued medical follow up care. Facing many obstacles and challenges throughout their lifetime, particularly when moving from children to adult services, this is the key point that Youth@Heart supports young people and families.
CHD Awareness Week is a weeklong annual commitment that helps create a space for everyone to discuss congenital heart disease and the challenges that come with it.
Who are Youth@Heart?
Youth@Heart are a Cardiac Charity working with young people. It was set up to empower, inform and support young people aged 15-24 living with congenital heart disease and their families across the South West of England and South Wales. The Charity funds a dedicated ACHD (Adult Congenital Heart Disease) Youth Worker and a Community, Youth and Family worker – who offer their support in-person or remotely to young people and families. The ACHD (adult congenital heart disease) Youth Worker is based at Bristol Heart Institute whom the charity work in collaboration with. In 2021 we made over 200 inpatient visits and attended clinics to be with and empower young people with complex heart disease, with over 350 new young people and families impacted by CHD being directly supported. We don’t want any young person with CHD facing the transition to adulthood alone, our team connect youth and families together, work face to face whether as an inpatient, outpatients clinics or out in the community.
How can YOU get involved?
CHD awareness week is used to provide a space for those who are impacted by CHD and their families. During this time, we should all try to show our support for the CHD community and to raise CHD awareness. There are a few simple ways to do this.
Raise Awareness – CHD Awareness Week is not only a time to bring your attention to CHD and those impacted by it. It is a time to share that same awareness with others. There are still many who have not heard of CHD and the impact it can have on a persons life and their family. At Youth@Heart we still hear from young people that they think they are the only one, this is something we want to change! Share your knowledge, share your experiences and help others connect and learn about CHD! Get in touch via firstname.lastname@example.org if you’d like us to share something on your behalf.
Donate / raise funds – our work is run purely from fundraising, grants and donations made to our Charity. We use this money to fund our ACHD Youth Worker and Community, Youth and Family Worker – to be within clinics, on the ward and in the community where people could benefit from our work the most. Without funding, we would not exist! Find out more here https://www.peoplesfundraising.com/wall/youth-heart-
Wear it red day – 4th February 2022 – wear it red to raise awareness of congenital heart diseas this heart month! You can also make a donation to Youth@Heart to help support our work for wear it red day!
Learn about CHD – Congenital heart disease impacts individuals all around the world, and it might very well impact your family or friends. Educating yourself is the first step to becoming a proud supporter and dedicated ally. By learning more, you empower yourself to be an advocate for those in need. Find out more about congenital heart disease here https://www.nhs.uk/conditions/congenital-heart-disease/
What we offer / the benefits
Our team are on hand 5 days a week, to chat to young people, their families, friends and those working in professional settings. We can come into your setting and talk about CHD, we can be referred to by clinical teams, community, families or young people can contact our Youth Team directly.
– A link to our thriving congenital heart disease community, meeting other young people aged 15 – 24 with CHD and getting families and siblings in similar situations linked up and talking
– Join our social platforms and chat to others who understand what it means to live with CHD, join us for events and activities across the South West of England and South Wales
– Enable your setting, be it clinical training day, a school, college, Uni, workplace or community group, to learn about Youth@Heart and appreciate more about living with CHD
How to Refer to us
Xander – ACHD Youth Worker