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Demystifying Epilepsy

Providing education and raising awareness on the true nature of epilepsy contrary to folklore beliefs in developing countries.

Photo of lucien kilonda
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What problem does the idea help to solve and how does your solution work? (2,000 characters maximum)

My idea is provide mobile electroencephalograph (EEG) testing and epilepsy education to people in developing countries, refugee camps, and immigrants. This idea will help reduce the number of people who are casted out of the community because they are believed to be possessed by a demon when they are experiencing a seizure. Educating the communities as well as providing mobile EEG testing will help in demistifying this disease and may help prevent people from being rejected from a community or another.

Geography of focus (500 characters)

Our main focus will be subsaharian Africa where many religions, customs, and traditions still consider epilepsy to be the result of a demonic possession.

Building Bridges: What bridge does your idea build between people on the move and neighbors towards a shared future of stability and promise? (500 characters)

The bridge my idea builds is the bridge of acceptance. Once the moving or receiving community begins to understand that epilepsy is a disease and not curse or demonic possession, we will begin to see more acceptance of peoe living with epilepsy. Acceptance and tolerance are 2 importants ingredients for people on the move.

What human need is your idea solving for? (1,000 characters)

My idea solves the need for people with epilepsy on the move to feel accepted and being treated with dignity. As an immigrant myself coming from the D.R.Congo and living in the USA, I have often found myself wanting to fit in and feel more accepted. I can only imagine what it feels like for an immigrant person suffering from epilepsy in a developing country where they would be doubly rejected.

What will be different within the community of focus as a result of implementing your idea? (1,000 characters)

The impact of my idea will immediately be noticeable as the communities will be educated and shown via EEG testing that epilepsy is just another disease and not the result of a demonic possession. Once dictation is provided and awareness is raised, the communities will treating people with epilepsy with more dignity and not as outcasts.

What is the inspiration behind your idea? (1,000 characters)

The inspiration for my idea comes from a childhood friend who had epilepsy and was locked away in a dark room every time he had a seizure. This ultimately drove me to build a career in Neurodiagnostics where one of my main responsibility is to help in the diagnosis of neurological disorders such as epilepsy and various neurologic syndromes.

Describe the dynamics of the community in which the idea is to be implemented. (1,000 characters)

I intend for this idea to be implemented in remote areas of subsaharian Africa where education is scarce and technology is limited. I would also like to target people in refugee camps who have limited access to any neurologic testing but certainly be affected by the ignorance of their customs or traditions.

How does your idea leverage and empower community strengths and assets to help create an environment for success? (1,000 characters)

Our mission in Nigeria was a small example of the bigger picture we would like to see. By training pioneers in neurodiagnostics, we are planting the seeds for the people who will be doing the ground work in their respective communities.

What other partners or stakeholders will work alongside you in implementing the idea, if any? (1,000 characters)

We have partnered on a small scale with a couple of Universities in Lagos/Nigeria,Mekelle/ Ethiopia, and India. We are still a young organization with enormous ambitions.

What part of the displacement journey is your solution addressing

  • Arriving and settling at a destination community

Tell us how you'd describe the type of innovation you are proposing

  • Technology-enabled: Existing approach is more effective or scalable with the addition of technology

Idea Proposal Stage

  • Pilot: We have started to implement the idea as a whole with a first set of real users. The feasibility of an innovation is tested in a small-scale and real world application (i.e. 3-15% of the target population)

Group or Organization Name

Global Organization of Health Education (GOHE)

Tell us more about your group or organization [or lived experience as a displaced person?] (1000 characters)

Our organization is devoted to making a difference. Members will travel to every corners of the globe to help people in developing nations who need healthcare education. We are particularly devoted in Neurodiagnostics education as 80% of our members come from a neurologic or neurophysiological background. Bringing awareness and providing epilepsy education for people on the move will be the perfect way for our organization to play a role in demistifying epilepsy.

Website URL:

www.gohealthed.org

Type of submitter

  • Other

Organization Headquarters: Country

I am the general secretary of GOHE which is a non-profit organization. However, this is a personal goal that I would like to achieve.

Organization Headquarters: City / State

Denver/Colorado and Houston/Texas

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Photo of AMUDU Jean Pierre
Team

Hi Lucien,
I like the idea but it seams so much complex in implementation because when we talk about faith this means religion and culture.
What would be the timeframe for your idea?
At what stage can the change be noticed?

Photo of lucien kilonda
Team

Hi Jean Pierre,
The idea is actually very simple. Our goal is not to change people’s cultures or religion, but we only wish to inform them and provide them with the education they will never have otherwise. For example, a few years ago HIV was so stigmatised that people affected by the disease were considered unclean and some people even refrain from shaking their hands. Now, with Global education are more informed about the way HIV is transmitted and have become a bit more accepting.
We hope to train pioneers for a couple of years and those pioneers will stay in the communities they live in and inform their people for as long as it takes. We expect to see change with 2 to 5 years. However, as you may know, changing people’s mentality may take a little longer.

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