Hello, my name is Paula, I am 32 years old and I work as a cinema producer/director. Six years ago I was diagnosed with Fanconi's Anemia, an illness that also my younger sister Julieta suffered ever since she was six. My sister died almost four years ago due to complications with her illness after having been in hospital for four months. Currently I am in a stable condition and I am not yet under any treatment or requiring any strong medication.
It is an unknown illness for almost everyone as it is really rare and not many people suffer from it. There are approximately 3,000 people suffering from Fanconi's Anaemia in the world which is why I have decided to film a documentary on it. My purpose with this project is interviewing both patients and their relatives and all professionals involved with the illness. I would like this project to be useful for patients, relatives and medical staff.
I have discussed this initiative with several foundations, organisations and relatives of patients within Europe, the US and the rest of the world. I would really love to travel and meet experts in the illness. I would love to interview those people and be able to spread my documentary all around the globe, not only in film festivals, but also on the internet, in medical spheres and through all possible means so that people become aware of Fanconi's anaemia. I want it to be useful for patients suffering from it. I would also like to create a web page where I could publish all the interviews I got, a platform and a communication channel for all patients.
I would like this initiative to be useful for everyone who is interested in the illness, an informative tool for patients so that they know better what it is, where to go and all latest news. Being a rare illness, people are not aware of it and I would like that to change. Therefore, I have been working relentlessly on this project for the last two years, so that it can become a reality and I can do my bit. These are my plans. I hope I can realize them.
A huge hug to all of you, Come on, perk up!