Helena’s HLHS Story

Hey my name is Helena Grace, I am 17 years old and I was born with a very complex and rare heart condition called Hypoplastic Left Heart Syndrome, HLHS.

For a teenager like me, HLHS can create a lot of uncertainty, worries and fears. We go through challenges that not many people are aware of, a lot of the time because they cannot physically see them.

Education is a big one. Navigating the school journey with a heart condition can be tough, fitting in, trying to be on the same level as everyone else. This is mostly down to the reduced energy levels that come from having a heart condition.

I would always try to do what the ‘heart healthy’ kids were doing, go where they were going. Eventually, all of the exercise would catch up with me and then I would hit a wall. After this, you are tired for days, recharging takes longer than you may realise.

Another challenge we face is the lack of understanding for complex heart conditions. It can be a never-ending battle, repeating yourself, explaining the complexities of your condition. It can make you feel unheard.

Over the years, the support from LHM has helped to build my confidence up massively. It helps to have a clearer understanding of what my heart condition actually means. Now I appreciate that not every day is going to be brilliant, and some days I will wake up with less energy, but now I feel empowered to make the right decisions and do what is best for my body. Sometimes you just need to stop and recharge.

The LHM youth team have helped me feel wanted, loved, valued and cared for when I discuss my heart warrior journey. I can relate to the LHM mentors, as they themselves have heart conditions, and my problems feel genuinely listened to. Having people to speak to brings a sense of comfort that you are not alone and things can eventually improve.

I’m also on the LHM youth chat. Socialising and taking your mind off your day-to-day health, the past and the future and allowing yourself to live life away from the battle of always thinking about your condition is crucial.

This inspiring story was shared by LHM Youth Zone member, Helena, Thank you so much.