Eden Social Welfare Foundation hosted an international seminar on drug hypersensitivity, safety for patients’ medical treatment and recovery from drug-triggered diseases with international and national experts on Nov. 29.
“Medicine for cold, anesthetic, antiallergenic drug”, these are common drugs that people use in daily lives. However, many people become very sick from taking medicine due to drug hypersensitivity or Stevens Johnson Syndrome (SJS).
SJS takes the first place of fatality rate in Taiwan for triggering medicine allergy. In the onset period of SJS, patients would develop massive areas of rashes and blisters so many of them would neglect or mistake it as syndromes of flues. But it can cause serious consequences for patients; some even become disabled or even lose their lives in the process. Those who made it through might also be left with other problems such as optical or kidney failure.
Expert in the area, Doctor Chong Wen-Liang from Division of Dermatology in Linkou Chang Gung Memorial Hospital has been long concerned of patients with drug sensitivity and their medical treatment for a long time. During the seminar, Dr. Chong shared the current situations related to Taiwan’s drug sensitivity with the public. Chong said, due to genetic reasons, Asians are more likely to develop SJS than Western countries. Take Taiwan as an example, the incidence rate is thirty times more than the U.S. He also said that drug hypersensitivity is like a loose cannon, it can happen to anyone, so that it is important for the government and medical centers to increase monitors and controls over drug usage as well as equip public with knowledge related to the seriousness of drug hypersensitivity to avoid for victims of it.
This time, the seminar also invited president of Japanese Ophthalmological Society, Mayumi Ueta, to share the care-taking experiences of side effects on eyes in Japan.
Most of the participants in the seminar are patients and their family members. One of the patients, Shih Yi-Hui, who is fifty-five-year-old, was a victim of drug hypersensitivity when she was in second grade in elementary school. It triggered her mucosal immune system infection that 80% of her skin was transformed. Luckily, she gradually recovered over the years. Just when she thought she already got rid of drug hypersensitivity, seven years ago, side effects of it burst out again, which resulted in serious deterioration on her eye sights. It left her only light perception. This unexpected incident made her once almost cut any contact with the outside world, even concerns from families became a source of pressure for her.
“I always hide my crutch secretly when my parents get home. I don’t want them to see me suffered, “ said Shih.
Fortunately, Shih participated in Drug Allergy Patients’ Association by chance. It was until then that she started to realize there are still useful and convenient resources in the society. She also started to learn how to use computers designed for people with visual impairment, and rehabus.
Shih said gratefully, that without fellow patients’ encouragement and assistance from the Association, she would not be able to face everything optimistically. “You can do anything. Nothing is impossible” become Shih’s motto now. Even though she can no longer move freely as she used to be, she chose to stand up bravely to face her physical limitation. She not only successfully swam through the Sun Moon Lake, but also climbed the summit in Shei-Pa National Park. She decided to encourage more fellow patients using her own story to not be afraid of the upcoming challenges and live their beautiful life to fullness.
Eden’s chief executive officer Huang Cho-Sung said, based on the spirit of “Eden is wherever it is needed”, Eden helped to establish the “Drug Allergy Patients’ Association”. Up to date, there are 85 members including patients and their family members. Besides, Eden also provides assisting services for career building, care taking and counselling. Eden set up the one and only SJS Symptoms Online Platform, which not only connect local and international SJS patients, but also create a space to share the latest information related to drug allergy. The platform connects volunteered patients from different area to form a complete service network, so that anyone can receive immediate assistance anywhere. In the future, it is expected to develop this platform into an Asia-Pacific information exchanging platform to avoid more families to fall victimhood to drug allergy.
