My name is Rachel, I am 29 years old. I am from Dunkirk, France.
My syndrome was recognized at birth following congenital abnormalities called Tetralogy of Fallot. These caused long periods of hospitalization for my parents and myself. Later, school years were very difficult, but I was able to obtain a diploma as an administrative secretary and get a job in a children's home, where I still work today. I love what I do, and I feel that I can make myself useful for others.
My biggest health concern is a pretty serious hearing impairment that is giving me trouble, but other than that I am mostly okay. Although I am pretty discrete, I gain self-confidence over time thanks to my family and my closest friends who are very important to me. I also managed to get my driving licence, although it took five tries! My next goal is to start my own family with my partner. We would like to perform a genetic profiling of embryos prior to implantation (DPI in France), but that is a pretty hard thing to get in France. The file is launched but the process is still long.
This is my testimony. Despite the difficulties of the disease, I can live like a "normal" person, which I am thankful for!