Out of the dark
Epileptics in Hong Kong have a tough deal, but a new support group hopes to help them, and the public, come to terms with the illness. Adele Rosi reports
EPILEPSY IS ONE of those conditions that has been around since the Dark Ages but, with its myriad causes and types - more than 40 have been classified but they strike people in different ways - it continues to baffle doctors and researchers to this day.
The disorder is characterised by often random but recurring seizures (previously called fits) that occur when there is an upset in brain chemistry. As explained by the British Epilepsy Association, this means that electrical messages, which tell the body how to function and are transmitted by neurons (nerve cells), become scrambled. They are processed in bursts and faster than usual, resulting in a seizure, which can involve anything from looking vague to loss of consciousness, jerking limbs and convulsions. This state lasts for seconds or minutes before the brain cells, and consequently the individual, return to normal.
The second most common neurological problem after migraine, epilepsy affects about 50 million people worldwide - more than 37,000 of whom live in Hong Kong. It isn't a disease so it's not contagious, and although it starts most often during childhood it can afflict anyone regardless of age, race, sex and ability at any time. Although in 60 to 75 per cent of all cases there is no known cause, those that have been identified include head injury, lack of oxygen at birth, illnesses such as meningitis, of which epilepsy can be a side effect, and strokes.
People with epilepsy are no different from anyone else between seizures, and when their disorder is controlled by medication, as the majority of cases are, they lead normal lives. Yet such is the stigma surrounding epilepsy in Hong Kong that many with the condition say the ignorant attitude of the public is harder to bear than the physical problem itself. One of the Cantonese translations of the word 'epilepsy' means 'insane' and 35 per cent of cases threaten to commit suicide following diagnosis.
Until recently, Hong Kong's epilepsy resources were limited, but thanks to a new non-profit-making organisation called Enlighten Action For Epilepsy, things look set to improve. 'There is so much misunderstanding about epilepsy and like many Asian cultures, Hong Kong has little tolerance for any form of disability,' says Joanna Perez, director of the group. 'Our job is to raise public awareness about the nature of epilepsy, to support those affected directly and indirectly with such services as counselling and to break through the prejudice.'
Enlighten was established in Scotland in the 1950s but split into two different entities, based in Glasgow and Edinburgh respectively, in 1996. Last year, executive director Karen Barclay, who works in the Edinburgh branch, and Scottish international and British Lion rugby player Tom Smith (one of the patrons) organised 'The Lion Sleeps Tonight' ball here to raise awareness of the condition and were shocked to find how little there was.
'The stigma is worse here than in Britain,' says Barclay. 'I just couldn't walk away from it.'
A year down the line and the organisation, the only branch outside Scotland, has its headquarters in the Tang Chi Ngong clinic at the Ruttonjee Hospital. Patrons include British Consul-General Sir James Hodge, some financial help has been received from the Keswick Foundation, and a fledgling team of support and youth workers, fund-raisers, training managers and volunteers is starting to take shape.
'We want to stress that we're not just working for expats or a certain sector of society but for everyone in Hong Kong,' says Perez. 'Our counsellors, support workers and most team members are local and bilingual and every service offered is free to the whole Hong Kong community. [Enlighten is also applying for charity status.] We hope that people with epilepsy or those who come into contact with it won't feel ashamed to come to us for help. That's what we're here for.'
Although Enlighten works closely with doctors, it doesn't deal with diagnostics and prescriptions but it nevertheless offers a range of programmes. On the support side, it is setting up a hotline to provide vital telephone counselling as well as one-to-one sessions and self-help groups for adults and children to help them deal with their condition and problems with relationships, careers and the physical restrictions arising from it. They will also get the opportunity to meet others in the same boat and to discuss experiences they might not have shared with anyone.
'We are definitely targeting youth,' says Perez. 'Adolescence is a hard enough time for anyone but with this condition it is twice as difficult. While their friends are going to clubs with flashing lights, drinking alcohol and learning to drive, teenagers with epilepsy often have to avoid such situations because the first two are well-known for triggering seizures and driving can be dangerous owing to epilepsy's unpredictable nature. Because people with the condition never know when they might have a seizure, this makes them more guarded and they often suffer from low self-confidence. Alternatively, they rebel by not taking their medication, which causes problems.'
A special women's service deals with issues such as contraception, pregnancy and caring for young offspring because, as Perez explains, a seizure while breastfeeding, for example, could have serious repercussions for mother and baby.
Parents of epileptics will also benefit from the organisation, which provides counselling and support specifically for them and sessions to teach them more about their child's condition. 'Education is another of our main priorities but we need more funding to do everything we hope to,' says Perez. 'We want to mount an advertising campaign aimed at the general public and run lectures and workshops in schools and colleges.'
The idea is not simply to talk to students but to instruct teachers - and other professionals, such as the police and firemen - on a more practical level. 'We teach them how to deal with someone having a seizure - for example, never put something in the mouth because it can be very damaging to the individual - when to call an ambulance, when not to, how to recognise signs of epilepsy and how not to alienate a child with the condition,' continues Perez.
While the organisation considers itself lucky to have the support and funding it has received to date, particularly in the face of difficult economic times, it still needs more. But this can start with everyone being more accepting of the condition. 'Don't think it could never happen to you because it could,' says Perez. 'Anyone can develop epilepsy, so think how you would want to be treated if you did.'
Enlighten Hong Kong hotline: 2820 0111