Promoting access to treatment for patients with haemoglobin disorders
For the thalassaemia syndromes the Thalassaemia International Federation, the international patients’ organization has been struggling since its inception in 1987 to facilitate access to treatment for all thalassaemia patients across the globe. Ever since we accepted the doctrine that where strong patient organisation exists, we have observed that there has been a marked improvement in the health care services provided for the haemoglobin disorders worldwide. Unfortunately personality or ego issues and lack or inexperience of strategic planning have always proved to be major drawbacks in achieving collective goals for patients. But the biggest obstacle to access to treatment in the years of my early adulthood has been no other than my self. Having finally secured safe and adequate blood, sample chelating agents and excellent medical professionals, I had decided that I had enough and I stopped chelating. I know now that the access to treatment has as much to do with our determination to live and prosper as with the influence of our countrymen to provide to the less privileged. My disorder provided me with much more than I could ever pray for… Thank God.
自1987年成立以来，地中海贫血国际联合会和国际病人组织一直致力于帮助全球此病患者接受治疗。 自从我们接受了“存在着最强大的病人组织”这个观点以后，我们注意到在全球范围内血红蛋白病人的医疗服务得到显著提高。 不幸的是，性格或自尊心问题、缺少或缺乏策略规划经验总是成为达到整体目标的主要障碍。 但是在我成年期的头几年，接受治疗的最大障碍莫过于自己。 在拥有安全和充足的血液、样本螯合剂和优秀的医疗人员后，我觉得这已经足够，便停止了螯合治疗。 我现在知道接受治疗与生存决心息息相关，同时也与我们能对其他人造成的影响相关。 在这次患病中，我得到的远远超过我所祈祷的……感谢上帝！
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