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Living Between Life and Death


My name is Sabrina and I am a medical student from Germany. I am living with one of the rarest and most dangerous types of congenital heart disease: hypoplastic left heart syndrome and some little heart defects more. This means that I am living with basically just half a heart and a different heart-lung-body circulation, which was build artificial through multiple open heart surgeries. This is the only way how I survive. But I want more than just survive. I want to live and that to the fullest.

CCHD effects my entire life and even if I don't let it define my personality, it shapes me. My illness is invisible so no one can see that i survived coma, surgeries and a heart arrest. But there is one part when the disability becomes visible: When my oxygen levels in my blood are low or my lung is pretty weak, I use additional oxygen or even a wheelchair. My lowest lung function was at 39%.

For me it's hard to gain acceptance with an illness, which can't be seen on the outside. People don't see the pills at breakfast or the ER visits in the night.

Yet, I am so thankful for being sick, because it taught me a lot about judgment, respect, selflove, courage and thankfulness. I learned to embrace the rollercoaster I live in and where I never know where the roas will lead to.

My disease might be invisible, but I am not. I am doing my very best to live a whole life with half a heart, with fighting against stigma and encouraging other warriors.

I am living between life and death and for me that's the opportunity to make something great out of it. And I try to let my power shine.


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