IBE - International Epilepsy Support

Hello my name is Mohammad Agus Rohmatulloh. I have epilepsy, I have a physical disability and I have difficulty in speaking, but this has not stopped me from advocating for a better understanding of epilepsy in families, in communities and beyond.

My parents describe me as a happy and healthy baby but then at the age of five years old I suffered multiple seizures that resulted in my loss of speech and my ability to walk and I struggled to eat without the aid of a feeding tube. I was very fortunate that my family dedicated their lives to me, not only by offering their constant support and attention when I was convalescing, but they also were willing to sell their house to provide more income towards my care. With their love and encouragement, and my determination, my speech improved and I was able to walk again although had a limp, but this meant I was able to go to public school and lead a fairly normal life.

Then a few years later in my junior school, I experienced a second round of seizures and that was the start of my frequent seizures, but it was not until getting to high school after yet more seizures that the school principle suggested I see a neurologist. I was diagnosed with epilepsy and put on specific medicine which I still use to this day. Truthfully, I feel that I need more in-depth examinations, but it is really expensive here in Indonesia. However, I have been able to complete my studies specialising in EEG and MRI and wrote my thesis on “Analysis of differences in electromagnetic waves in people with epilepsy (PWE) using electoencepalography (EEG)”.

A support network is very important for people living with epilepsy so in 2014 a few of my friends and I created a local community called JATIM ODE for PWE in Surabaya to share their experiences and be able to talk openly. With just 10 original members, now there are hundreds including neurologists. The issues discussed are increasingly diverse from problems regarding medicine or simply lack of self-confidence to the anxiety of parents who have children with epilepsy. Last year, I enrolled in the PROGRESSIVE programme (an inclusive generation programme); the support and advice from my friends in the JATIM ODE group was invaluable. After graduating, I was fortunate enough to get an internship with the PROGRESSIVE programme which I really enjoyed and through this, I received an invitation to speak in the Social Week of Airlangga University. I hope that through my experience with JATIM ODE that I was able to deliver the message that people with epilepsy should not be afraid and that they can still attain university education and work in the same jobs as everyone else.