A Life of Lonliness: Mainouna’s Story
“Imagine the feeling of sleeping on a wet bed every night and to wake up very early to clean it and put it on the roof to dry before people wake up.”
I was born in Nouakchott, the capital of my country Mauritania. I have three brothers and one sister, and we live together with our parents in a simple house in one of the modest areas of Nouakchott called Arafat.
It has been very hard to live with bladder exstrophy. My childhood was difficult because I could not leave home. I didn’t have any friends and I could not go to school. I played only with my brothers and my sister. I knew that I was different because I wear diapers and it hurt me that I can’t live like others.
As a child, I did not understand why my mother stopped me from going to school and kept me away from other children. Having a condition like bladder exstrophy in Africa and the Middle East is very complicated. If you are different, people will treat you very badly so my mother kept me at home because I was unable to protect myself from other children and society. My uncle taught me at home and when I was 15, I passed the college entrance exam and began to go to school!
“Imagine you cannot drink because you are afraid to urinate.”
But going to school has its challenges. I cannot afford to buy diapers for both daytime and nighttime so if I need to leave my home for more than 3 hours, I don’t drink anything. The diapers I am able to afford are of very bad quality and they cause serious irritations that hurt so much I cannot sleep. I suffer a lot in silence because I don’t want to worry my parents. I know that it would hurt them, so I keep my pains inside me and only show them that I am a strong woman who is always smiling.
I have a few friends, but they do not know I have bladder exstrophy. The worst feeling I have, now that I am a woman of 27, is one of loneliness. I feel love, but I run away from it because I cannot be in a relationship.
“I am now filled with hope that my life will be better after surgery.”
I am so grateful for A-BE-C and the surgeons who have offered to take care of me. I hope to someday stop using diapers, feeling dry without them. I dream about getting married and creating a family. You gave me hope and I pray for a better future and a life sweeter than mine. God bless you thank you so much.
About the Armenia Medical Mission
Since 2011, pediatric urologist Paul Merguerian, MD, has taken his skills to Arabkir Medical Center in Yerevan, Armenia, on a medical mission to provide assistance with and management of complicated pediatric urological issues.
In an ongoing collaboration between the Urology division at Seattle Children’s Hospital (SCH) and Arabkir Medical Center, the goal of the mission participants is to both perform complex surgical procedures and, perhaps more importantly, to train junior doctors how to perform these procedures themselves. Arabkir Medical Center is the largest pediatric medical services provider in Armenia. With your help, Mainouna will receive life-changing surgery during this workshop.