Fictional story. Written for this practice project. It does not describe a real person or real patient data.
Meeting other patients was the moment I stopped feeling like a medical file and started feeling like a person again.
I was 24 when my doctor first said the words Alport syndrome. I had never heard them before, and neither had anyone I knew.
The hardest part
The hardest part was not the treatment. It was feeling alone. My friends were planning trips and careers; I was planning around dialysis sessions.
What changed
A nurse gave me the leaflet of a patient association. At my first meeting I met people who understood without explanations. They taught me how to travel with dialysis, how to talk to my employer and how to ask my doctors better questions.
Today I volunteer with that association and help newly diagnosed patients.
This is a fictional story written for a practice project. Marta is an invented person.