Opening Press Conference of Taiwan Dravet

Opening Press Conference of Taiwan Dravet Association

Parents of Dravet Syndrome patients have been working on solving their children’s problems indrug use, medication and finding medical assistance before the day when Dravet syndrome became one of the announced rare diseases on May 30. They also established Taiwan Dravet Association, which is now joined by 34 patients. All the members came together in the morning of November 2 at Non-Government Organization in Taipei to hold the opening press conference.

Wendy, a cute11-years-old girl, is so beautiful that others can’t find any difference from other people from her. However, Wendy developed slowly, being unable to walk stable and fell down easily. Her mind also stopped at the age of 5-6. She suffered from irregular epilepsy. Till now, the doctors had found the right diagnosis for her and prescribed helpful medication and the frequency of her epilepsy is greatly decreasing. Although the medication she uses, Diacomit, can control epilepsy well, it is not covered in National Health Insurance. The cost of this medicine is about 60 thousand dollars every 6 months. It is not affordable by most people.

We can see the importance of diagnosing Dravet correctly in Harry’s family. Harry was a well-developed child when he was born. At the age of 8, he had a severe cold followed by febrile convulsion for times. As a result, he started taking anti-seizure drug. Doctors suggested he install a Venus Nerve Stimulator, which costs 1.6 million dollars, in his brain to control the abnormal electrical discharge of brain cells. Unfortunately, it was in vain. Later, he underwent corpus surgery. The large wound from left ear to the right on his brain distressed his parents. Actually, Wendy and Harry share similar conditions. Taking wrong medicine is worse than not taking one.

The chairman of Dravet Association believed that there are still more Dravet patient family tortured by their children who are unable to be diagnosed earlier. As a result, he hoped to make a sharing platform for all the family of Dravet by establishing this association. Moreover, he hoped more doctors can learn how to diagnose Dravet syndrome through this platform as well. They make it a goal to make the medicine of Dravet, including Diacomit and CBD-oil (medical used cannabis) being paid by general health insurance to relieve the economic burden of the patients. They are also working on making gene sequencing of Dravet syndrome one of the subsidy projects of rare disease genetic test of the government.

Translator: Newny Chiang (MS), Reviewer: Albert Kuo