Covid Story

This article has been shared by Shenaz Haveliwala, a person living with epilepsy in India.   The COVID-19 outbreak has been a global scare. But, for me, coronavirus became serious only when the lockdown was announced. This mainly meant that I had to have my medicines in stock. I had stocked two months of medicine, but then the lockdown kept extending, so I got really anxious. What if pharmaceutical companies shut down? I have Tablet Briviact in my prescription which is not manufactured in India, so I was really scared if logistics are hampered, things will be really difficult for me. The uncertainty was terrible. Unfortunately, my seizures had become more frequent. My doctor's prescription was going to expire in two months, these things were always on my parents' and my mind. The government was very supportive, especially when it came to healthcare. We had medicines delivered to our homes, with online payment and medicine parcel left with the security, to avoid any human contact.  There were doctors and nurses working two-three times more time than their scheduled duty. That was assurance that even if I hurt myself during a seizure, there would be medical help. I have a start-up, operating from [...]

This article has been shared by Fredrick Beuchi, an epilepsy awareness activist and caregiver in Kenya.   My sister wondered why I had taken so long to visit them at home. Now that she knows how to operate a cell phone she would call to ask if am ok. It was mid-March, 2020 I had traveled to Nairobi city from the coastal town of Mombasa where I live with my family. I was preparing to host an event lighting up the tallest building in Kenya called The UAP-Old Mutual Tower in purple, to mark Epilepsy Purple Day, which happens on 26th March every year. Fredrick Beuchi I was so excited about the event, it had received massive support and good will from the city government and media across the country being the first one of its kind. Three days to the event Kenya announced its first case of Covid-19 through a live TV coverage by the Minister of Health. The announcement came with an equal share of fear and panic to the people, it wasn’t long before all public events and gatherings were cancelled with immediate effect. As it downed in me that the Purple Day event was also [...]

My heart was racing because of the urgency to get a store of medications which are always hard to afford and rare to find. It all started like something unreal when I first heard about Covid-19. It was so far away in China and it had killed a lot of people. As we monitored the news, Covid had spread to other parts of the globe and countries had started to lockdown their social lives. My first thoughts and worry were about for my daughter. Not that she was in any of the countries where cases had been reported: she was here in Uganda with me; but she has epilepsy. My heart was racing because of the urgency to get a store of medications which are always hard to afford and rare to find. My daughter was equally worried and this raised her anxiety. Those who are caregivers like me will appreciate what I was going through and for those who have never experienced a near to no supply of life long medication, it would be hard for me to explain. Every single medication was tripled in price and this was very frustrating. I walked from pharmacy to pharmacy and could not [...]