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Group formed for those with rare genetic disease

A support group for sufferers of tuberous sclerosis complex (TSC) was founded yesterday to raise public awareness about the disease.

TSC is a genetic disorder that causes benign tumors to form in several organs -- primarily the brain, eyes, heart, kidney, skin, liver and lung.

"TSC is estimated to affect one in 6,000 people," said Hsieh Shu-ling (謝淑玲), the president of the Alliance for the Tuberous Sclerosis Complex Patients (結節性硬化症病友聯誼會), founded yesterday.

"That means of the 23 million people in Taiwan, about 3,800 have TSC."

Families and doctors of TSC sufferers urged the public to accept those with the disease and consider their welfare.

Members of the alliance said they would work on promoting awareness on this rare disease and to press for provision of services and welfare for TSC sufferers and their families.

"We want to encourage all TSC patients and their families in Taiwan to come and join us -- so we can help one another and together work on the common goals to benefit our patients with TSC," Hsieh, whose child has TSC, said at the launch of the alliance yesterday.

Hsieh said TSC patients must live with the disorder their entire lives. "Parents of these children struggle with issues related to education, health insurance and socialization, among others," Hsieh added.

"It is regrettable when we hear cases that schools refuse to admit TSC children because of the kids' symptoms.

"We strongly hope that the public can give TSC patients respect and fair treatment in society."

Wang Huei-hsiung (王煇雄), doctor of child neurology at Chang Gung Memorial Hospital, said signs of TSC include white patches of skin and angiofibroma, which occurs at a later age.

Angiofibroma is a noncancerous growth of the back of the nose or upper throat. It often begins as a red facial rash that appears especially around the nose, chin and cheeks and later develops into the small non-cancerous tumors.

"TSC is a genetic disorder, so it is not contagious," Wang said. "The neurological symptoms of TSC typically involve epileptic seizures and varying degrees of intellectual impairment.

"The epileptic seizures are uncontrollable and, in many cases, the level of intellectual impairment worsens as the patients age. Some TSC patients will have autism, schizophrenia, depression and other challenging behavior as well."

Wang said there is no known cure for TSC.

"However," Wang said, "early diagnosis, medication, treatment and surgical operations can help reduce the severity of the seizures."

The alliance also called on the government to invest in medical research on gene mutation to discover a more efficient treatment for TSC.
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