Anne-Claire Pannisset



My name is Anne-Claire PANISSET. I'm french and I was born on the 8th day of May 1980 with cystinosis. I was diagnosed at the age of one and a half. I had all the troubles that go with cystinosis like a great need to drink, I prefered salty food to any other, I was vomiting, I have been hospitalized many times for dehydration ... But that's a period I don't really remember. I mostly remember the problems my parents had to make me take my medicines and especially with cysteamin as it stinked and made me feel sick. A doctor told my parents to send me to a home for children where I would learn to take and live with the treatment and it had been a really tough time: I was only 2 years old, it was the first time I was leaving my parents for such a long time (nearly 6 weeks). After then I had a normal childhood (except some problems with other children because of the bad breathe once and many times because of my little height) until I was 10 and in "end-stage renal failure". I needed to sleep a lot so I stopped normal school and started home schooling with my mom as a teacher. During 4 months she taught me all I had to know to enter Junior High School (I think that's the equivalent for what is called college in France) and in March on the 19th of 1991 I had my first kidney transplant before I need to undergo dialisis. I had some problems of infection because of the immuno-suppressive treatment but nothing very serious. I lived really well during 9 years with that new kidney. But, for my last year in high school, I had had some teenager problems (stress due to the big final exam: the baccalaureat -which I passed-, the feeling of not being understood) and to try to live like any other 19-year-old (life of whom I thought was much easier, with no constraint) I stopped my treatment against rejection of transplant. I want to insist on this point because I did this stupid thing without being really conscient of the unavoidable result of such a behaviour and I think it's important to talk about this problem as I know I'm not the only one to have done this big "mistake". I lost my kidney so I had to undergo dialisis. THAT IS THE WORST THING IN THE WORLD!!! I wanted to die (it was so painful!!), I had no more social life, I was always exhausted, I couldn't eat anything and I lost 15 kilos. After one year, my mum gave me one of her kidney. That was the 10th of July 2000 and I will never thank her enough for giving me life twice without looking to her own pain.I'm 1m55 and 55 kilos. Thanks to the Lynn Potts scholarship award, I've been able to spend this year as an Erasmus student in Seville, Spain and to pass my second University diploma in Applied Languages.

Anne-Claire and Family
Anne-Claire and Family