世界节假日博览 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.
世界血友病日始创于1989年，目的是唤起人们对血友病的认知，关注血友病人群的疾苦。由于4·17是世界血友病联盟发起人法兰克·舒纳波的生日，所以将该日定为4月17日。在这一天，全球血友病机构会开展一系列活动，帮助血友病患者。每年的主题都大不相同。去年的活动包括“注射疫苗，远离A,B型肝炎”，为所有出血性疾病患者进行治疗。世界血友病联盟表示称，治疗包括物理疗法、了解信息、培训、诊断以及研究治疗方法。


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.
血友病一词来源于希腊语“haima”，意为“血”，以及“philia”，意为“去爱”。血友病是遗传疾病，病人会出现频繁出血情况。身体中的凝血功能消失。由于血友病遗传，所以它会代代相传。所有有病基因全部通过女性传递，并几乎全部遗传到男性后代中。如果血友病患者受伤，那么出血的时间要远长于正常人。就算是小伤口也会流血数周，在许多情况下，伤口永远无法复合。如果大脑受伤，那将会是致命的。血友病患者备受压力，即使是小伤口也要加倍小心。