Mother of two little girls, I discovered the disease when my second was born. The latter has a short form. During hospitalizations we felt very alone, especially during the very first one in intensive care. We had no information about the illness, about what it meant on a daily basis but also for our daughter's future. She had a stoma for 7 months, then a replacement. I am from Lyon and Maëlie is followed at the HFME in Bron. I remain available to families in the region to discuss and discuss the disease.

I am the mother of two boys, one of whom has the short form of Hirschsprung's disease. From his first day of life he was in pain, even going into respiratory arrest. He was rushed to Toulouse University Hospital where a superb team saved his life. He was operated on at 4 months old and has now had a normal life since he was 7 months old. I will be delighted to be able to discuss with you and help you in this obstacle course.

My name is Baptiste, I am 29 years old and I have had Hirschsprung's disease since birth. Operated on D2 with installation of a colostomy and operation at 8 months using the Duhamel method for the connection. Today I am doing well despite “discomforts” which are manageable, we learn to live with them and I tell myself there are always people worse off than us! I will take great pleasure in answering your questions and sharing my past and present experience. You can reach me at 06.82.62.19.23 or by email: linaybaptiste1@gmail.com

I am the mother of a 6 year old boy with a long form of the disease. He is the only one affected in the family. His treatment journey is long and punctuated by hard knocks and pitfalls. I am committed to ensuring that illness and this obstacle course do not hinder our personal and family development. We live in Île de France and are very well and humanely cared for at the Robert Debré hospital. I am delighted to be able to exchange, support and share our experiences. You can reach me at 06.33.90.86.43 or laure.weis@gmail.com

Mom of Paul born in 2000 with a long shape, it is a family shape. After the shock of the diagnosis and the installation of a stoma, things went rather well after the restoration of continuity. Then birth of Bastien in 2002, in total shape. It was at this time that we joined AFMAH. Bastien's medical journey was long and complicated. Today Paul is doing very well, Bastien still has to deal with difficulties, but he has a completely normal life. I'm always happy to share my experience, even if it's a little old! You can contact me at: 06.53.96.64.48 or by email: virginie.marmonier@laposte.net

Just like you, I am affected by Hirschsprung's disease. I learned to discover it and live with it. I will be available to discuss this pathology with you in order to help you better understand it on a daily basis. You can contact me at: 06.53.96.64.48

Fanny, 38 years old, I have full-blown Hirschsprung's disease. I was operated on several times in my first years of life in Marseille. I became a childcare nurse and joined the association in order to discuss this disease and the difficulties that we can encounter. Do not hesitate to contact me. if you wish to exchange 06.63.72.80.98 or fanny.berger.rubio@gmail.com