This website and It’s Rare For Me project is organised and funded by Chiesi Global Rare Diseases
This website and It’s Rare For Me project is organised and funded by Chiesi Global Rare Diseases
This website and It’s Rare For Me project is organised and funded by Chiesi Global Rare Diseases
CHOOSING TO LIVE IN THE MOMENT
Moa
Karlstad,
Sweden
“I realized that I have knowledge from a patient perspective that nurses don’t have, maybe they haven’t even been in the hospital as a patient. So, I had the knowledge and I thought «I would like to do something with that». That’s why I decided to be a nurse. It’s so important to know what they’re going through and just be there for them.”
Moa is a 25-years old woman who was diagnosed soon after birth with Nephropathic Cystinosis, thus facing many challenges since a very young age. Regardless of the disease she lives with, Moa never lost her positive attitude towards life. She even went beyond that, turning her experience into a powerful source of purpose. Indeed, inspired by her own journey, she is now pursuing a career in nursing, driven by a deep understanding of what it means caring for others.
Sweden in December is certainly not a warm place.
The town of Karlstad, three hours by train from Stockholm, felt even colder.
But when we arrived at Moa’s home, we were immediately surrounded by a new and wonderful kind of warmth: her cozy house, her two lively and incredibly affectionate dogs, her sister… it all felt like a tender and beautiful embrace.
Photographing her and capturing her portrait was a truly intense moment – and finally, warm!