By Amber Kaiser
Kasam Parkar and I recently connected on LinkedIn and I was interested in learning more about his personal experience with epilepsy and how he started The Voice for Epilepsy in Birmingham, UK. We met over Zoom and had a great conversation! I could tell Kasam is very passionate about using his own experience with epilepsy to raise awareness and give a voice for those who literally don’t have a voice or are afraid to speak out. With his personal experience living with seizures as well as his life experience before and after being diagnosed with epilepsy, he brings his natural drive and determination to help others living with epilepsy.
A few years after the attack, Kasam was attending University and studying for his finals when he collapsed and was rushed to the hospital. He was just 23 and had experienced his first seizure. He continued having constant seizure activity at the hospital and went through numerous tests and scans and was eventually diagnosed with epilepsy.
The seizure disorder diagnosis of epilepsy was a shock to him and his family. No one knew what epilepsy was, how it affected people, and if there were any treatments or support. As is common for a lot of people, he was simply prescribed seizure medication or antiepileptic drugs (AEDs) and sent on his way.
It took Kasam a long time to adapt to living with epilepsy and the constant seizures. Even with the everyday challenges, he promised himself that he would not let anyone else feel that they had no support going forward.
Kasam says, “My personal best achievement is undoubtedly finding the strength to fight back and reclaim my life.” He has used his mission of standing up for others to fight back and live his best life despite the real challenges of living with epilepsy. Creating The Voice for Epilepsy is his biggest achievement and he’s proud to help others by raising epilepsy awareness and education in the community. He provides raw advice and information about different types of seizures, employee assistance, transportation options and answers many other questions about learning to live with epilepsy.
How epilepsy affects the way we live can go far beyond the condition. Some people are so ashamed and afraid of the resulting prejudice and epilepsy and discrimination (especially epilepsy employment discrimination) that they’re reluctant to tell anyone that they suffer from epilepsy. As such, by talking about it, educating the public, and raising awareness, The Voice for Epilepsy is starting to soften the attitude.
There is also a stigma and taboo within the ethnic community and more needs to be done to help them understand epilepsy. The need to raise epilepsy awareness, tolerance and understanding is, perhaps, more important than ever before. Sufferers can become withdrawn and even experience suicidal thoughts. By raising awareness and promoting our cause, we can improve quality of life.
Kasam believes that epilepsy is not talked about enough in television, newspapers, social media, with celebrities and the reality of how living with epilepsy affects the person on a daily basis. Epilepsy still carries stigma. It’s shrouded in mystery and misunderstanding; few people want to talk about it and worse, don’t know how to react when someone nearby has a seizure.
There is also a big gap between doctors like General Practitioners, patients and the general public. Patients often feel like they don’t really understand seizures and epilepsy as well as the medications for epilepsy.
The Voice for Epilepsy works tirelessly to educate, inform and communicate with schools, communities, workplaces and the public to spread awareness including improving public awareness and understanding of the social stigma of epilepsy, educating the public about what to do if someone has a seizure, helping others accept their condition, “stamping out” epilepsy discrimination and reducing the negative impact on mental health, relationships, quality of life, employment and education.
Kasam has a full time job and works in the evening on the charity. He manages social media, plans events, arranges fundraisers, and answers emails and questions on social media.
"Together, we hope to make a significant difference to all those impacted by epilepsy and to ensure that the community is aware of the signs, advice available and can access support when they need it,” says Kasam. “If you like what we do, consider sharing your story and supporting our fundraising efforts.”