Project Inspire Africa With Fides Uiso

Fides Uiso is a single mother to a child with a severe form of epilepsy known as Dravet Syndrome; who have suffered stigmatization because she is raising a child with epilepsy. Determined to live above this stigmatization. Fides became vocal about her child’s condition and is today inspiring hope in families with epileptic children. In this interview with Project Inspire Africa, Fides shares her story, struggle and successes. 

Can we meet you? 

My name is Fides Uiso a 33-year-old mother and founder of Tanzania Epilepsy Organization a non- governmental Organization based in Tanzania. I am a human right champion for people living with Epilepsy and passionate about seeing them enjoy equal rights.

Tell us briefly your childhood experience.

I am the last of a family of six. When I was a child I believed Epilepsy was contagious and hereditary because that’s the narrative that was pushed in my community. It wasn’t strange to anyone to see people living with epilepsy been discriminated against and stigmatized.

What’s your educational background?

I had my primary school education at Mapambano Primary school in Dar es Salaam Tanzania before moving to Kiraeni Secondary School for my Ordinary Level, and Jangwani Secondary School for my Advance Level. I hold a Diploma in Human Resources Management from the Institute of Social Work from Dar es Salaam Tanzania. I also have several certificates like a Certificate in Leadership and Communication from Libre foundation, Seizure Recognition and First Aid from Epilepsy Foundation of America, Implementation Science from Muhimbili University of Health and Allied Science amongst others.

What are your contributions towards making your country a better place? 

In Tanzania, Epilepsy comes with stigma and this is even strengthened by the Law. For instance, Section 39 (a)(ii) of the Law of marriage Act [Cap29R.E.2019] provides that a spouse may petition for annulment of marriage if at the time of marriage, the other spouse was subjected to Epilepsy or recurrent attacks of Epilepsy. To challenge this narrative, I founded the Tanzania Epilepsy Organization a non- governmental Organization based in Tanzania. Our work has been revolved around creating Epilepsy awareness in our community through social media, TV, radio stations and outreach programs and encouraging families with people with epilepsy to speak out in the face of injustice of any sort.

What steps did you take to bring your vision to fruition?

Legal Registration of the Organization was the first step I took to set the ball rolling and the next step was finding people to work with. 

What have been your achievements?

We have conducted several outreach programs and awareness events in schools and special needs centres reaching around 200 people including families.

Our key events includes:

-Nishike Mkono Project: through this we helped children of under 5years old who were living with epilepsy to access medical insurance. This project was launched in February 2022 and so far we have already contributed 20 medical insurances. 

-Epilepsy Awareness Project: This project has focused on creating awareness around epilepsy as a medical condition and first aid measures. We take our awareness campaigns to schools,hospitals,mass and social media. Since we began we have been to 7 different local radio stations and 5 TV stations. 

-I Love Someone With Epilepsy Project: This project was launched on this year’s Epilepsy Day. The aim of this project is to reduce stigma and advocate for inclusion for those living with epilepsy. We also recognize organizations that employs people living with epilepsy, and those working to end stigma like we are doing. We are also keen to advertise, celebrate and promote the achievements of people living with epilepsy.

 

What motivated you to do what you are doing?

 After my child was diagnosed with severe epilepsy, I became a victim of discrimination and stigmatization. It was then I decided that I wasn’t going to be silenced by my sorrow. My pain became the motivation to speaking for others having similar experiences and I am glad I made that decision.

What has been your major challenge since you began your nonprofit?

Funding so far but we will continue to do our best.

How have you been able to raise money to implement your ideas?

The monthly contribution of our members, support from our NGO partners fundraising.

Could you share with us one or two experience(s) you have had in the course of your campaign that has impacted on you?

This year we managed to organize the International Epilepsy Day. On that day we got a number of Epilepsy champions who publicly shared their experiences and how the society perceive them. They told me that they got the courage to speak about their experiences because of me and they believe together we will change the negative attitude towards people with Epilepsy. They also told me that because of the work I do, they have been inspired to accept themselves and strive to be the best version of themselves. This meant a lot to me.

 What are your prospects in the next 5 or 10 years?

To own a Hope Center where all those affected with epilepsy can find a safe space. We also hope to generate enough momentum to change the Marriage Law.

What do you think is the major cause of unemployment in Africa, and how can we get over this? 

Sometimes the employment opportunities are not available and the environment for self-employment isn’t conducive for youth to employ themselves. On the other hand, some youths have very big expectations in a way they cannot see small opportunities.

If you had an opportunity to speak to presidents in Africa, what would be your message.

Make the development of your nation a priority.

Thank you for reaching your story with us.

it is my pleasure!