世界節(jié)假日博覽 第71期:世界血友病日

World Hemophilia Day (WHD) started in 1989 as a way to raise awareness of the disorder and to bring attention to the needs of those who suffer from it. The reason it’s on April 17 is because that’s the birthday of the World Foundation for Hemophilia (WFH) founder Frank Schnabel. On WHD, organizations around the world organise a wide range of activities, events, and campaigns to help hemophiliacs. There is a different theme every year. Previous campaigns have included “Get vaccinated! Prevent hepatitis A and B” and treating people with all bleeding disorders. The WHF says treatment includes areas such as physiotherapy, information, training, diagnosis, and research for a cure.
世界血友病日始創(chuàng)于1989年，目的是喚起人們對血友病的認(rèn)知，關(guān)注血友病人群的疾苦。由于4·17是世界血友病聯(lián)盟發(fā)起人法蘭克·舒納波的生日，所以將該日定為4月17日。在這一天，全球血友病機(jī)構(gòu)會開展一系列活動，幫助血友病患者。每年的主題都大不相同。去年的活動包括“注射疫苗，遠(yuǎn)離A,B型肝炎”，為所有出血性疾病患者進(jìn)行治療。世界血友病聯(lián)盟表示稱，治療包括物理療法、了解信息、培訓(xùn)、診斷以及研究治療方法。


Hemophilia comes from the Greek haima “blood“ and philia “to love“. It is a group of genetic disorders that makes it difficult for the body to stop cuts bleeding. The cells that the body needs to clot blood are missing. Hemophilia is a hereditary disease and so it is passed down through generations. The gene that creates the disorder comes from the mother and is passed almost entirely to male babies. When hemophiliacs get a cut, the bleeding lasts much longer than in normal people. Even a small cut can bleed for weeks, and in some cases cuts may never heal. If cuts occur in the brain, they can be fatal. Hemophiliacs live a stressful life because they always have to be careful not to get even the smallest cut.
血友病一詞來源于希臘語“haima”，意為“血”，以及“philia”，意為“去愛”。血友病是遺傳疾病，病人會出現(xiàn)頻繁出血情況。身體中的凝血功能消失。由于血友病遺傳，所以它會代代相傳。所有有病基因全部通過女性傳遞，并幾乎全部遺傳到男性后代中。如果血友病患者受傷，那么出血的時間要遠(yuǎn)長于正常人。就算是小傷口也會流血數(shù)周，在許多情況下，傷口永遠(yuǎn)無法復(fù)合。如果大腦受傷，那將會是致命的。血友病患者備受壓力，即使是小傷口也要加倍小心。