The Ankylosing Spondylitis Caring Society (ASCS) yesterday released a 30-minute film featuring four ankylosing spondylitis patients as part of its efforts to increase public awareness of the chronic arthritic disease, whose sufferers often turn to unorthodox methods to assuage their pain due to a lack of medical knowledge of the condition.
Titled Warriors with Boundless Happiness (勇者幸福無疆), the film was produced by Taiwanese production company O-Turn Films (黑糖媒體), which gained recognition after its well-received documentary Rock Me to the Moon (一首搖滾上月球), depicting the predicaments of the families of patients with rare diseases, won an award at the 50th Golden Horse Awards last year.
One of the patients featured in the film is 63-year-old Lin Kuan-sheng (林關生), who has suffered his whole life with ankylosing spondylitis and rheumatoid arthritis, and has lost all mobility except for his right hand because of the long delay in seeking treatment for his condition.
“I started exhibiting symptoms of rheumatoid arthritis when I was just 12 years old, but instead of taking me to hospital, my parents, who lived in an isolated suburban area with limited access to medical knowledge, turned to divine forces to seek a cure for my illness,” Lin said on the sidelines of the film’s premiere in Taipei yesterday.
Lin said he drank so many “bowls of incense ashes-laced water,” which is believed to be effective in curing diseases or dissipating spirits by some Taoists, he lost count and that he was not diagnosed until he turned 30.
“The doctor who diagnosed my disease told me at the time that my conditions would not have deteriorated to such an extent if I had received proper treatment 10 years earlier,” Lin said.
Chen Hsin-hua (陳信華) of Taichung Veterans General Hospital’s Division of Allergy, Immunology and Rheumatology said an estimated 70,000 people in the nation suffer with ankylosing spondylitis, a chronic inflammatory disease that primarily causes inflammation of the soft tissues around the vertebrae of the spine.
“In some serious cases, the long-term inflammation leads to calcification of the affected tissues, causing patients to lose spine flexibility or suffer with a severe hunchback,” Chen said.
ASCS director-general Kao Cheng (高正), who is also a sufferer, said the association’s priority is to promote the “three musts” for patients with the chronic illness — must have medical knowledge of the illness; must obtain the social resources available to them; and must seek medical treatments covered by the National Health Insurance system.
“Although ankylosing spondylitis is like an armor given by God to patients like myself, it does not stop us from working hard, embracing life with a smile, and being loved by our families or someone special,” Kao said.
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