Hydrocephalus & Spina Bifida: How Ephrance overcame hopelessness, discrimination and neglect

I am Ephrance Nadongo. I was born like any other child 25 years ago in Kampala, the capital city of Uganda but soon after my birth, doctors realised I had a birth defect called Spina Bifida, a very delicate birth defect that would affect my entire life. At only three days old, I had to undergo surgery to close my back and after the operation, I suffered Hydrocephalus and at only three months, a shunt was later placed to help the flow of brain fluid at Cure Hospital in Mbale, Uganda.

My life was just under hope and faith due to the fact that doctors had already concluded that I might never be able to walk at all or even go to school, more so have an independent life. My parents had to embark on a very long and expensive journey of being with me in hospitals to get physiotherapy and exercises. When all hope was lost, at three years I miraculously started crawling, even walking and started going to school.

At school however, discrimination was the order of the day. I was called names that traumatised my young mind. By then as my nickname was “duck” based on the way I walk. Also, my performance at school took a hit. Since I was a slow learner, my performance in class was so poor and I was blamed for it unknowingly that Hydrocephalus was causing it. My mother had to pay a teacher at school to look after me whenever I had seizures when I was in senior high school. All these were part of my traumatic experience.

My dream was to become a teacher for learners with disabilities and to inspire them. I eventually attained a certificate in child care although after completing my course, getting a job was a hurdle because no head teacher believed in my potential but focused on my physical impairments.

I kept the search and after one year of sitting at home, I got a job as a teacher after a long journey full of tears, rejection, traumatisation and being neglected.

Now I am attaining positions I never thought possible and I am among the great faces of courage in this disability circle. I teach and empower people living with disabilities as a way to boost their self esteem. Recently, I was at the Ugandan parliament to lauch a forum for persons with disabilities in Uganda where they must be in the conversation in the legislative arm of government after years of neglect.

Today is World Hydrocephalus Day and my message on this occasion is:

Sharing your story is healthy because it makes you free at heart.
Believe in yourself, the world will take you in a way you package yourself.
Disability is not the end of the world. You can use it to your advantage and it may be your strength.
Seek medical attention. Let no one lie to you that disability is witchcraft or a curse.

Inspire before you expire. The world is watching.

Ephrance can be reached via:

Facebook: Ephy Ephrance

WhatsApp: +256 772 722908

Email: enfrancenadongo@gmail.com