My arrival on earth has been marked with strangeness. I, who doesn't like to do like everyone else, found myself with a lot on my hands! Why was that? In short: the Di Georges Syndrome invited itself into my body!
I was diagnosed with this disease at the age of five at the Brabois University Hospital in Nancy, France. To make this diagnosis, my parents and my two brothers and I carried out a genetic test. After a long wait for the results, it appeared that none of my relative was affected… except for me. Why me? To this day, I still don't have an answer.
My medical journey consists of multiple examinations, hospitalisations in day hospitals in order to locate the parts of my body that are or will be impacted by Di Georges. A treatment with calcium and vitamin D has been put in place. Doctors were not able to give an opinion on the evolution and effectiveness of the treatments for this syndrome, which left us very worried for the future.
By the way, my name is Clémentine, I am 32 years old and I am married. I lead a peaceful life in spite of major hardships in my private life, including the death of my father. Aside from that, I have a thriving professional life and a great husband who brings me a lot and to whom I am very grateful.
I want to thank my parents, whose love has been – and still is – vital to help me face the trials that the disease laid down for me. I want to thank my mother in particular, for fighting and persevering, allowing me to be who I am today. I want to thank my friends for their support and advice, they will recognize themselves.
Here is my piece of advice in the face of the disease: make the most of every moment, of what life gives you.