Fundraiser for inherited heart conditions
Donation protected
As a child, I would often complain that my heart was beating too fast. When I was 6 years old, I had a sudden cardiac arrest while at my family’s country house and had to be helicoptered to the nearest hospital. For years, I was in and out of hospitals undergoing endless testing and the doctors had no idea why or what was going on.
It wasn’t until 2015 that I was finally diagnosed with a rare, inherited heart condition called Brugada syndrome.
It was difficult to receive the diagnosis of Brugada syndrome because there is little awareness about this illness and even less research being done. Recent reports suggest that Brugada syndrome could be responsible for up to 20% of sudden death in patients with structurally normal hearts. As a result of the lack of awareness and research around this disease it is likely much more widespread than we know.
Brugada syndrome affects the electrical system of the heart and often causes the heart to beat rapidly and abnormally. This results in decreased blood flow to the brain and the heart and, from what we do understand, one of the first manifestations of the disease can be sudden cardiac death.
As my own situation deteriorated and became more serious, I was lucky to be in the care of the extremely knowledgeable team of doctors at the Royal Brompton Hospital in London. The Royal Brompton carries out some of the most complicated heart and lung procedures and surgeries anywhere in the world, treating both adults and children. Without this team and their pioneering work in the field, I would probably not be here today.
Since my diagnosis, the rest of my family has also been tested and both my brother and mother have the same disease. While they are both asymptomatic (carriers but don’t show symptoms), the disease still requires some day to day routines. For example, it’s extremely important for them to avoid becoming dehydrated or getting a fever as these can actually trigger symptoms. They are both being treated in Sweden, where limited research is currently done and limited resources is available.
I have amazing support from family, friends and colleagues and, most importantly, my team of doctors and the hospital staff as we navigate through the diagnosis and treatment of this serious and misunderstood illness.
Now, it’s our turn to pay it forward to increase awareness and research for Brugada syndrome so that more people can receive the proper care that they desperately need. Our goal is to raise GBP 5000 to be split evenly between the British Heart Foundation and the Swedish Heart and Lung Foundation (Hjärt och Lungfonden). In this effort, every penny counts!
To raise awareness and money, a group of friends, family and I will be undertaking a number of challenges and events in 2019. To keep updated on these please check back to this page. If you have any questions or would like to get involved with any of the challenges or events don't hesitate to contact us.
Please click on the link in order to make a donation via credit card.
Thank you in advance for your support!
It wasn’t until 2015 that I was finally diagnosed with a rare, inherited heart condition called Brugada syndrome.
It was difficult to receive the diagnosis of Brugada syndrome because there is little awareness about this illness and even less research being done. Recent reports suggest that Brugada syndrome could be responsible for up to 20% of sudden death in patients with structurally normal hearts. As a result of the lack of awareness and research around this disease it is likely much more widespread than we know.
Brugada syndrome affects the electrical system of the heart and often causes the heart to beat rapidly and abnormally. This results in decreased blood flow to the brain and the heart and, from what we do understand, one of the first manifestations of the disease can be sudden cardiac death.
As my own situation deteriorated and became more serious, I was lucky to be in the care of the extremely knowledgeable team of doctors at the Royal Brompton Hospital in London. The Royal Brompton carries out some of the most complicated heart and lung procedures and surgeries anywhere in the world, treating both adults and children. Without this team and their pioneering work in the field, I would probably not be here today.
Since my diagnosis, the rest of my family has also been tested and both my brother and mother have the same disease. While they are both asymptomatic (carriers but don’t show symptoms), the disease still requires some day to day routines. For example, it’s extremely important for them to avoid becoming dehydrated or getting a fever as these can actually trigger symptoms. They are both being treated in Sweden, where limited research is currently done and limited resources is available.
I have amazing support from family, friends and colleagues and, most importantly, my team of doctors and the hospital staff as we navigate through the diagnosis and treatment of this serious and misunderstood illness.
Now, it’s our turn to pay it forward to increase awareness and research for Brugada syndrome so that more people can receive the proper care that they desperately need. Our goal is to raise GBP 5000 to be split evenly between the British Heart Foundation and the Swedish Heart and Lung Foundation (Hjärt och Lungfonden). In this effort, every penny counts!
To raise awareness and money, a group of friends, family and I will be undertaking a number of challenges and events in 2019. To keep updated on these please check back to this page. If you have any questions or would like to get involved with any of the challenges or events don't hesitate to contact us.
Please click on the link in order to make a donation via credit card.
Thank you in advance for your support!
Fundraising team: Run for the beat (3)
Alexandra Wall
Organizer
Belinda Roads
Beneficiary
Belinda Roads
Team member
Pascal Vossen
Team member
