The Taiwan Association for Ichthyosis yesterday called on the government and the public to help the association open a care center in Taipei for patients with the skin disease.
The association opened the nation's first such center in Kaohsiung in July. Ichthyosis is a rare genetic skin disease characterized by dry, thickened, scaling skin.
Nearly 50 ichthyosis patients and their families attended a press conference organized by the association yesterday to share their stories of living with the disease. They spoke of life-long physical pain and the plight of being rejected by society.
"When I was in elementary school, no one, not even the teachers, wanted to get near me and classmates called me `ET' or monster," said 21-year-old Lee Chun-wei (
Lee has been suffering from serious ichthyosis, which not only causes scales and the blistering and festering of skin, but also the atrophy of his bones and deterioration of his knee joints.
Ichthyosis is actually a group of rare skin disorders with a wide range of severity and associated symptoms. People with the disease have an abnormal skin shedding process, that is either too slow or too rapid.
Serious cases can also involve heart, eye, brain and bone disorders.
There is no cure for the disease, only treatments, which aim to keep scale thickness to a minimum through frequent hydration of the skin.
"Since ichthyosis can be disfiguring, many patients not only have to cope with the physical ailment but also have to bear the curiosity of the public because of their appearance," said Chen Li-chin (
Chen also said that the body odor caused by the bacteria trapped in the dead layers of the patients' skin and the skin scraps that fall from their bodies could seriously hamper a patient's social interaction with other people.
There are at least 1,200 people suffering from ichthyosis in Taiwan, according to the association. They said most are unemployed due to their illness and appearance.
"These poor sufferers, abandoned by society, need a shelter to give them support and a space for them to learn and work," Chen said.
Chen said that since the establishment of the care center in Kaohsiung, the association has received requests from many patients for another one to be established in northern Taiwan.
The Kaohsiung care center has a secondhand shop run by the patients, housing for those patients who are homeless or whose families can not afford to take care of them and a therapeutic pool to lessen their pain.
According to Chen, the association would need at least NT$12 million to establish a similar center in Taipei.
"Since we have only raised a little over NT$1 million at present, we will launch a campaign in October to encourage public donations. Hopefully, we can expect a care center in Taipei before the end of next year," she said.
For details on how to make a donation, contact the Association for Ichthyosis at (02) 2748-2908 or (07)537-7746.
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