A Life Turned Upside Down After spending two years in the USA as a postdoctoral researcher, I returned to my hometown, Kolkata, eager to live with my family and build my career here. Shortly after, I conceived and decided to wait until my baby was born before resuming work. I thoroughly enjoyed my pregnancy. Apart from gestational...
https://youtu.be/_qjzLGTg-_A Since it began in 1993, Somerville Heart Foundation has been helping people across the UK living with congenital heart disease. This patient organisation is dedicated to supporting those with CHD - from young people transitioning to adult services, through every life stage to those growing older.Providing a range of services and support including advocacy, communication,...
This profile is part of the Global ARCH Storytelling Series to celebrate our members, their personal stories, and the work they do to help others. I was a young mum and in a state of shock when I was told that my baby had a very major heart condition. It was a very tough journey, and I’ve cried...
I hope that training on rheumatic fever and rheumatic heart disease among health care providers improves so that it is as well recognized and treated as other health conditions. I also hope that we can get better information materials for community members and health workers, in different languages, in our healthcare facilities....
One year ago, Global ARCH lost a guiding light. Noemi de Stoutz was a trailblazer and dedicated champion of CHD advocacy and support. Born in Switzerland with complex CHD, Noemi survived far beyond expectations. Despite her limitations, she spent her life helping others as a palliative oncology physician. She was forced to retire early due to...
This webinar highlights the global burden of disease for congenital and rheumatic heart disease and the challenge of accessing treatment in low- and middle-income countries. It also introduces the Call to Action campaign, which will be introduced at the 8th World Congress of Pediatric Cardiology & Cardiac Surgery (WCPCCS) in August, 2023. The webinar presenters...
CHD Awareness Day recap Every February 7-14 patient and family advocates around the world participate in Congenital Heart Disease (CHD) Awareness Week. It is a time to raise awareness of CHD in their local communities. Global ARCH and Children’s HeartLink are two leading childhood-onset heart disease advocacy organizations that work to improve lifelong outcomes worldwide. What is CHD? CHD...
1. What would you suggest to parents of CHD children when it comes to building resiliency so that mental health issues can be addressed early? I’d like to first say that I have a great deal of respect for parents and caregivers of children with CHD – I recognize how stressful their own experiences can be...
Amy Verstappen has been a patient advocate and health educator since 1996, when her own challenges living with a complex heart defect led her to the Adult Congenital Heart Association, where she served as president from 2001 to 2013. She has served as an advisor to the Centers for Disease Control the National Heart, Lung and Blood Institute; and the International Society for Adult Congenital Cardiac Disease, and worked with congenital heart patient and professional groups throughout the USA and the world. Ms. Verstappen received a Masters in Education in 1990 and a Masters in Global Health in 2019.