Imagine having a health condition that is so stigmatized you feel compelled to live with it in silence. What if the very name of the condition indicates that you might be crazy? People living with epilepsy in Hong Kong know exactly what we are talking about.
Epilepsy is a common neurological condition characterized by recurrent seizures and has historically and globally borne the brunt of myths and misconceptions. Worldwide people with epilepsy are subjected to prejudice, however, in this part of the world the very name of epilepsy is stigmatizing.
In June 2010, the Chinese name for epilepsy was changed from “Dean gan tsing” (crazy seizure disorder) to No gan tsing (brain seizure disorder). To have a condition that is synonymous with being insane meant that many with epilepsy struggled to talk about the condition or to seek help, and found they were living in silence.
Epilepsy affects more than 50 million people worldwide - that's more than multiple sclerosis, cerebral palsy, muscular dystrophy and Parkinson's disease combined. In Hong Kong there are an estimated 65,000 people (about one per cent of the population) with the condition.
Enlighten-Action for Epilepsy is the only non-medical, epilepsy focused charity in Hong Kong with a mission to support those affected by the disorder and to also remove prejudice through community education.
Enlighten provides community support and welfare services aimed at improving the quality of life of those with epilepsy through counseling, support groups and member outings. In addition there are education and training services to increase epilepsy knowledge and understanding.
The AWA has supported Enlighten-Action for Epilepsy for the past two years. In 2010 Enlighten received HK$30,000 to fund two community support and welfare events that directly supported people living with epilepsy.
The HK Dolphin Watch was an outing that not only brought smiles to the faces of the children, but also provided a support network opportunity for their parents. The Christmas party of 2010 was another great event promoted by the AWA.
In 2011, the AWA funded the printing of literature and booklets to educate the community at large, as well as those with epilepsy. Given that it is an unfamiliar condition in Hong Kong, it is important that the myths be replaced with facts.
The internet might be a go-to place for those who speak English, thanks to many epilepsy associations from Australia, Canada, USA, and UK, but for the Cantonese speakers in Hong Kong there aren’t many resources available, making it essential for Enlighten to produce educational literature.
March saw the launch of Enlighten’s latest awareness campaign: Paint the Town Purple. Purple is the color associated with epilepsy around the world, so the charity hopes to build awareness by encouraging the Hong Kong community to go purple.
The AWA has agreed to support this campaign and are promoting the Enlighten’s purple wristbands at the office. They are available for a donation of a purple note (HK$10) so please get involved.
Claudia Schlesinger, CEO of Enlighten-Action for Epilepsy said: “This March is also the start of our charity’s tenth anniversary. By running the Paint the Town Purple campaign over the next twelve months we hope to bring greater awareness about epilepsy in Hong Kong.
I hope there will be a day not too far away, when the color purple will be as easily recognized as the color for epilepsy awareness as pink is for breast cancer awareness.
We cannot thank AWA enough for their support. As a small charity that is not government funded, your every dollar helps us get one step closer to realizing our mission.