Living with an incurable heart disease

My name is Hannah Phillips, I’m 21 years old and I live with my family in London. I was born three months premature, and at six months I caught meningitis. That’s when I was diagnosed with an incurable heart condition called Complicated Ebstein’s Anomaly. Some days, I am absolutely exhausted. 

In Complicated Ebstein’s Anomaly, defects in the heart mean less deoxygenated blood is pumped to the lungs. To compensate for this dysfunction, the heart works harder. This can lead to thickening of the heart muscle and heart failure.

My first open heart surgery

Growing up, I wasn’t aware of how much the BHF’s work as a medical charity would benefit me during my life.  But when the time came, boy did I need them. By the time I was nine years old, I had my first open heart surgery to repair my faulty valve, and to patch a hole in my heart. I was also fitted with a pacemaker to help regulate the rhythm of my heart. 

Facing my heart condition head on

Being bullied throughout school made my already-challenging journey even tougher. I wasn’t treated well by the kids at my school, I wasn’t feeling well and I didn’t understand what was happening to my body. I didn’t want to face that fight that was in front of me. I soon decided it was up to me to take control of the one thing I knew I could change. I realised that to know myself, I should get to know my heart and everything about my condition. I turned to the BHF and soon found out it was an incredible source of information. 

Time to take control of my heart

I wasn’t exactly sure what I was looking for, but I subscribed to every BHF mailing list, liked every Facebook page and ordered the BHF’s free resources, one of them being a newsletter. That’s where I found some power and strength. One of the most powerful elements of the BHF’s services was, for me, reading real life stories of people who were going through or feeling the same as me. 

With young people’s stories in mind I joined [email protected] – a BHF programme specifically for young people. It allowed me to meet other young people with heart conditions and feel accepted. The more I get to know people living with heart conditions, the more I realise and understand how vital the BHF’s work is.
The impact the BHF has on so many people is invaluable.

Support for all affected by heart disease

Medical charities like the BHF are not simply there for the purpose of the patient, they are there for everyone who is affected by heart disease. Whether that be family, friends or medical professionals, the BHF tends to all. Whilst their research, leaflets and youth engagement has been great, for me it’s the people behind the scenes who are the heroes. My experience of the BHF has been very human. 

The British Heart Foundation feels like home

Sometimes I have good days, and other times I have bad days, but at the end of the day I’ve always felt at home with the BHF. The great thing about the BHF is that I know I haven’t even scratched the surface. If I ever I want to find something out, read up on new advancements in care, or perhaps just read through someone else’s moments of courage, I know exactly where I need to go.  The BHF has already given me huge support and strength of mind, but could impact me in other ways in the future too. 

The impact of research on Hannah’s future

BHF Professor Bernard Keavney at the University of Manchester is studying the genes of families affected by congenital heart conditions like Hannah’s. Professor Keavney and colleagues are using state-of-the-art technology to screen people with congenital heart disease for genes that may underlie their condition. With this knowledge, the Manchester team aims to better prepare families on what to expect, and in the long-term, develop more effective treatments. 

Hannah is a blogger and the creator of Hannah’s Heartbeat.

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