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.
ROLLER-COASTER RIDE: More than five earthquakes ranging from magnitude 4.4 to 5.5 on the Richter scale shook eastern Taiwan in rapid succession yesterday afternoon Back-to-back weather fronts are forecast to hit Taiwan this week, resulting in rain across the nation in the coming days, the Central Weather Administration said yesterday, as it also warned residents in mountainous regions to be wary of landslides and rockfalls. As the first front approached, sporadic rainfall began in central and northern parts of Taiwan yesterday, the agency said, adding that rain is forecast to intensify in those regions today, while brief showers would also affect other parts of the nation. A second weather system is forecast to arrive on Thursday, bringing additional rain to the whole nation until Sunday, it
LANDSLIDES POSSIBLE: The agency advised the public to avoid visiting mountainous regions due to more expected aftershocks and rainfall from a series of weather fronts A series of earthquakes over the past few days were likely aftershocks of the April 3 earthquake in Hualien County, with further aftershocks to be expected for up to a year, the Central Weather Administration (CWA) said yesterday. Based on the nation’s experience after the quake on Sept. 21, 1999, more aftershocks are possible over the next six months to a year, the agency said. A total of 103 earthquakes of magnitude 4 on the local magnitude scale or higher hit Hualien County from 5:08pm on Monday to 10:27am yesterday, with 27 of them exceeding magnitude 5. They included two, of magnitude
CONDITIONAL: The PRC imposes secret requirements that the funding it provides cannot be spent in states with diplomatic relations with Taiwan, Emma Reilly said China has been bribing UN officials to obtain “special benefits” and to block funding from countries that have diplomatic ties with Taiwan, a former UN employee told the British House of Commons on Tuesday. At a House of Commons Foreign Affairs Committee hearing into “international relations within the multilateral system,” former Office of the UN High Commissioner for Human Rights (OHCHR) employee Emma Reilly said in a written statement that “Beijing paid bribes to the two successive Presidents of the [UN] General Assembly” during the two-year negotiation of the Sustainable Development Goals. Another way China exercises influence within the UN Secretariat is
Taiwan’s first drag queen to compete on the internationally acclaimed RuPaul’s Drag Race, Nymphia Wind (妮妃雅), was on Friday crowned the “Next Drag Superstar.” Dressed in a sparkling banana dress, Nymphia Wind swept onto the stage for the final, and stole the show. “Taiwan this is for you,” she said right after show host RuPaul announced her as the winner. “To those who feel like they don’t belong, just remember to live fearlessly and to live their truth,” she said on stage. One of the frontrunners for the past 15 episodes, the 28-year-old breezed through to the final after weeks of showcasing her unique