TAIWAN HAS 1,300 PEOPLE WITH HAEMOPHILIA|全國1300位血友病患 籲各界了解與關懷

About 1,300 people are living with haemophilia in Taiwan. Haemophilia is often confused with leukemia, but it is a completely different disease as it is a genetic disorder. Patients lack a clotting factor in their blood and cannot stop bleeding after an injury. They may also suffer from spontaneous bleeding. Doctors advise patients to avoid stre-nu-ous exercise, but suggest swimming and cycling as good ways to build muscle strength. 26-year-old graduate student Mr. Wu is living with haemophilia. His dream is to take a motorcycle trip around Taiwan. Because of his condition, his joints and muscles often experience spontaneous bleeding. Though he appears to be in perfect health, he still finds it necessary to sit down on the Metro. ==MR. WU haemophilia patient== The biggest problem that haemophilia causes in our lives is that it affects our range of motions, particularly our arms and legs. The bleeding could happen in our joints and our muscles, and it affects our physical activity. Because they suffer spontaneous internal bleeding, hemophilia patients are often restricted in their physical activity. Doctors emphasize that haemophilia is a genetic deficiency in blood clotting factor, and completely different from leukemia. Though haemophilia patients often suffer bleeding, they can still swim or cycle to improve their muscle strength. ==CHANG CHIA-YAO Director, TMU Center for Hemophilia== Strenuous, high-impact exercise should be avoided. For example, soccer is inappropriate. But swimming and cycling can strengthen the patient's muscles all over the body, particularly the muscles near the leg joints. This protects those joints and improves their overall physical health. Currently, about 1,300 people in Taiwan are living with haemophilia. Over 80% of bleeding in haemophilia patients occur inside the joints, and repeated bleeding causes joint problems that are the most common complication of the condition. With World Haemophilia Day approaching on April 17th, patients hope that the general public can become more knowledgeable about the disease. TRANSLATED BY：JOHN CHEN 國內目前大約有1300位血友病患，外界很容易將血友病誤認為白血病，其實血友病是遺傳性的出血疾病，由於缺乏凝血因子，受傷不容易止血，病患因為常常自發性出血，影響生活，醫生建議避免刺激運動，但游泳和騎單車，可以增加骨骼肌肌力。 戴上安全帽，乘著風，騎著自行車，26歲、攻讀研究所的血友病患吳同學，最大的夢想是騎重機環島，從小罹患血友病，關節和肌肉常常會自發性出血，雖然外表看不出來，但尤其是搭捷運的時候，就需要找位子坐下來。 ==血友病患 吳同學== 血友病其實造成的不便 最明顯的應該大概就是 我們行動上的 不論是手或腳的行動 那因為這個出血的問題 會出現在關節的部份 或者是說一些肌肉的部份 這連帶的出血一定會 影響到我們的行動 因為時常會自發性內出血，血友病患的行動常常受到限制，醫生強調，血友病只是遺傳性的出血疾病，缺乏凝血因子，並非白血病、血癌，雖然容易出血，但還是可以多做游泳和騎單車等相對緩和的運動，增強骨骼肌肌力。 ==北醫血友病中心主任 張家堯== 避免那個激烈的 比較衝擊性的運動 像踢足球就不合適 那這種游泳 騎腳踏車 對他的全身的肌肉 腳的關節的肌肉 有一個強化的作用 會保護他的關節 並且他的身體的整體的運作 就會更加的健康 目前國內大約有1300名血友病患，出血部位80%以上屬於關節內出血，反復出血會造成關節病變，是血友病最常見的併發症，每年4月17號是世界血友病日，也希望各界對血友病更加了解。 記者 林欣儀 蔣龍祥 台北報導