Epilepsy—a major cause of burns in East Timor
Emera District, East Timor - July 2005
DULCE - HER STORY.
Dulce is an 18-year-old from Emera, Emera District of East Timor.
Three years ago Dulce developed epilepsy.
As soon as she had the first bouts of seizures, her life dramatically turned for the worse.
Suddenly Dulce was hated by her father and he used the slightest excuse to beat her. Her stepmother (her mother is deceased) called her a witch and in order to prevent her transmitting epilepsy to others burned her clothes and even her primary school certificate!
Dulce’s father and stepmother continued mistreating her, starving her and not allowing her to attend school, until finally a distant relative, Manuel, took pity on her and took her into his home. Manuel obtained traditional Timorese medicines for Dulce but they gave her no relief from seizures that she had as often as two to five times per day.
Two months ago, as Dulce was trying to get warm by a fire on a cold morning, she had a seizure during which her right forearm fell into the fire. She received a second degree burn extending almost to the elbow before Manuel pulled her out of the fire.
Dulce was admitted to the district hospital where she was diagnosed with epilepsy and anti-epileptic medication commenced immediately. After discharge she was followed up by a district mental health nurse and since then has not had any more seizures.
Having been returned to ‘normalcy’ by the medication Dulce is most anxious to return to school. However, Manuel cannot afford to send her back to school as he has his own children to care for.
East Timor Epilepsy Association seeks help!
The story of Dulce reveals much about the plight of epileptics in East Timor.
The fight to bring epilepsy out of the shadows is yet to be started in East Timor. Until about a year ago, there was absolutely nothing on the ground. There is a strong taboo placed on epilepsy with enormous negative effects on those afflicted with the condition.
Community education is needed urgently in East Timor. It will take years before a noticeable effect will be seen but the first step has been taken with the establishment of the East Timor Epilepsy Association a year ago. The association is yet to find the sponsorship it desperately needs. The understanding in East Timor of the pressing need to save the epileptics from their horrible conditions is very low, and in any case for many life in East Timor is a daily struggle to survive. The ETEA is therefore seeking sponsorship from abroad.
The ETEA intends to identify those epileptics who have been abandoned by their families like Dulce and look for people who could sponsor them for a couple of years to enable them to attend school, live in decent houses, wear decent clothing and feel that they are loved.
The ETEA would be willing to forward the list of such epileptics to potential sponsors.
The topography of East Timor is so rugged that there is limited access to most of the epileptics who live up in the mountains. The East Timor Epilepsy Association presently have no means of mobility. The association will need a four wheel drive vehicle and two motorbikes to search and find as many of the epileptics as possible in East Timor and start them on medication and provide follow up.
At this point only an insignificant number of epileptics are on medication. The majority are still using traditional Timorese medicines which leave them worse off and worse still impoverishes the epileptic and their family further until a point is reached where the family abandons them to their fate.
(based on information supplied by ETEA)
For further information—
Mr Jose Mali, Coordinator, ETEA.
Dr John Anaje, Adviser, ETEA.
Tel: +670 723 5779 (Dili office)
e-mail: eteainfo@yahoo.com
Or in Adelaide please contact Rebekah Kuehn
e-mail: rebekah.kuehn@excite.com
You can also purchase The Entertainment Book from Rebekah as an ETEA fundraiser!