SHATTERING SILENCE THROUGH ACTION
Pushing past the headlines of the pandemic is no easy task at this stage of 2020 — especially for already maligned health conditions.
Epilepsy, and the sometimes-tragic result of Sudden Unexpected Death in Epilepsy (SUDEP), needs charities like SUDEP Action UK to continue their essential work and for their message to reach wider audiences and the general public.
The pandemic is diverting healthcare attention and budgets, but we cannot let the bad news of COVID-19 drown out the voices of communities who are already underrepresented in society.
During the pandemic, I have continued to interview families and healthcare professionals in the epilepsy communities in different parts of the world, and have heard a range of issues, from access to medication and in-person check-ups, scans, results, while also hearing of cancelled community events and mental health issues due to isolating effects of the pandemic.
While the world has gone to work online, so has the epilepsy community and the vital support networks, services and charities. This has had cascading effects.
I know that SUDEP Action — despite their continued commitment — has faced challenges, too, and have been affected by furlough and working from home constraints.
I have been awed by their resolve and unflinching commitment to campaigning and supporting the epilepsy community and families recently bereaved by SUDEP.
The new-normal socially-distanced work environment is why online campaigns such as #SpeakUp2SaveLives is so crucial to continue to show communities — who are spending exorbitant amounts of time online — that amid the noise of the pandemic, the epilepsy community is still represented.
SUDEP Action and the wider epilepsy community needs their message to continue to be heard by governments at local, national and international levels so that the thousands of families affected by SUDEP each year are represented.
At a grassroots level, SUDEP Action engages policy-makers and puts pressure on those in power to develop educational and healthcare preventatives to mitigate SUDEP occurring.