In Colombia, Hesperian partner Mauricio Olave collects feedback and suggestions for our book-in-progress on epilepsy and seizures
For the past year, Hesperian has been working with community groups in Asia, Sub-Saharan Africa, and Latin America, to gather feedback on the book we are developing about epilepsy and seizures. Among our partners is Mauricio Olave, who is affiliated with our global partners at the International Bureau for Epilepsy (IBE). A speech and language pathologist based in Colombia, Mauricio has gone above and beyond in his efforts to support the development of our book. He has translated multiple chapters from English into Spanish, held in-person discussions with people living with epilepsy, caregivers, and health care workers, and coordinated the review of content by colleagues across Latin America. Here we share a short interview with him offering insights into our partnership. The interview has been lightly edited for clarity and flow.
Hesperian: The creation of this book has truly been a collaborative effort of our team led by Writer/Researcher Aditi Malhotra. Our approach to gathering feedback also encourages a collaborative approach. What has been the most rewarding aspect of bringing the groups together to read, review, and discuss the draft chapters?
Mauricio: Epilepsy is a condition that affects so many people around the world, but the stigma and discrimination are worse than the seizures themselves. Epilepsy not only touches the person who suffers from it, but also their families. In the groups, the opportunity to listen to every experience and support all those involved has allowed us to learn from each other as we read, debate, analyze, and provide feedback while respecting each other’s ideas, needs, and thoughts. Working together in this way has taught me to be more tolerant, to understand that another’s perspective is as valuable as my own. It has allowed me to learn from other points of view and experiences that I’ve never had and contribute a little more. I’m so happy to be able to help empower people with epilepsy and all those around them. I’m also glad to have met the people at Hesperian who are trying to raise awareness, support community-led work on epilepsy, and do their bit to change our world.
Hesperian: How did you go about identifying and recruiting people to participate in the discussion groups?
Mauricio: In Cartagena de Indias, I work with the Colombian Center for Epilepsy and Neurological Diseases Foundation (FIRE). We have self-help groups where we work with people with epilepsy, families, and the community at large. We also carry out advocacy and prevention programs for epilepsy and other neurological conditions in rural areas where doctors are not available. I have a wonderful relationship with the entire epilepsy community in Colombia—people with epilepsy, their caregivers, and family members. I constantly engage in dialogue with teachers, police officers, and students about epilepsy. We also visit schools and universities. All of this is aimed at reducing stigma and discrimination, supported by a Colombian law that was passed in 2010, protecting people with epilepsy in Colombia. 
To reach out to discussion group participants, I followed your lead at Hesperian in terms of the kinds of people to invite, based on their relevant experience. I contacted them, explained the project, and sent the title of the chapters so that potential participants knew the topics and could show their interest. Almost everyone I reached out to was happy to be part of a review group. Sometimes it was hard to meet in-person, and to find dates for all of us. Despite some obstacles, the participation and mutual learning was very active and interesting.
Hesperian: Have you had any insights into epilepsy-related topics that seemed new or different to you while reading and discussing the book chapters?
Mauricio: Yes, of course! For example, the recommendations for natural products and ways to help a person with epilepsy who gets burned during a seizure are new to me. The strategies that encourage people with epilepsy to carry basic information, such as cards, bracelets, and others, are very good ideas. Here in Colombia, a few people with epilepsy may have information about it, but most of them do not do it. Another example is information about rescue medicines that are rarely used in my region. So, all the information found in the chapters has been quite valuable for me and the other participants in the discussion groups. It has been a great learning experience, and I see that we have to expand our knowledge on the subject, share information, and raise awareness among people with epilepsy and their broader communities. The chapters are very enriching, which allows for continuous learning.
Hesperian: What comments and opinions have surprised you the most, and in which group did they occur?
Mauricio: There are so many examples. In the group that reviewed Chapter 7: Pregnancy and birth with epilepsy, we strongly identified with the book’s recommendations for best practices and what should be done. At the same time, we agreed that some of them are often not done. The most striking thing was the suggested weekly check-up during the last month of pregnancy. It is not done here, and we think it should be implemented. We were also surprised by the variety of emergency medications, which we rarely use here in Colombia. I think we need to raise awareness about this topic.
In the discussion for Chapter 6: Living well with epilepsy, we really enjoyed all the information about yoga. This type of exercise is very rarely implemented in our region, as yoga is viewed synonymously with social and economic status, and many people in our area have limited economic resources. We liked how clear and simple the instructions are, and how yoga has been presented as something anyone can do without special equipment or fees.
For the group that looked at Chapter 2: How to help a person having a seizure, we really enjoyed being able to consider the variety of situations that a person with epilepsy may face. It felt especially important to find information in the chapter on seizures that do not involve convulsions, like absence seizures, as there is a lack of information about these seizure types. Many people mistakenly think that only generalized tonic-clonic seizures exist.
Hesperian: What benefit do you see in the process of user-testing Hesperian materials, like the book on epilepsy and seizures?
Mauricio: This process empowers many people; they will feel heard and can contribute from their diverse experiences to make the information as comprehensive as possible. It’s a good idea that allows the book to have the widest possible acceptance, since only the readers themselves and people with different experiences can fully enrich what is written. The opinions of people who participate in the discussion groups bring great benefits, such as complementing the information, evaluating it, making it clearer and more useful, and helping us identify what information is missing.
Hesperian: Would you share a story about a specific moment or conversation that happened in one of the review sessions, so we can bring your work to life?
Mauricio: A situation that was funny, but left us concerned at the same time, was when we talked about what people do when someone with epilepsy has a seizure. This came up in our discussion about the chapter on how to help a person who has seizures. We agreed that in our communities in Colombia, people usually don’t provide first aid when someone has a seizure because there is fear and ignorance . Often people mistake a person having a seizure for someone who is drunk or on drugs. They prefer to stay away, wait for someone else to help, or, worse, they just record a seizure with their cell phone and post it on social media.
This left us worried because people should have more information and awareness about epilepsy and must learn how to help if a person has a seizure. We know that we must improve awareness and train others how to help if someone needs has a seizure. This chapter in particular left us thinking a lot about how to design and implement more strategies to reach and train as many people as possible.
