交叉性和大象病:案例研究

Orphanet Journal of Rare Diseases很荣幸能介绍加文·乔恩(Gavin Choong)的这篇文章,稀有疾病的信标andMEDICS4RADESEASES'“学生语音”竞赛。

As much as access to modern healthcare has improved in the decades preceding, patients – particularly those struggling from rare diseases – still experience institutionalised discrimination and marginalisation. Such is the case withelephantiasis,一种寄生虫感染,导致淋巴液在受影响区域的淋巴液积累引起的手臂,腿部和外生殖器的扩大。尽管尚未使用永久治愈该疾病,但已经发现,早期抗生素治疗会在症状严重之前杀死蠕虫幼虫。交叉性提供了一个分析框架,研究了患者身份(性别,职业,文化,教育和社会经济地位)如何塑造接受象质病治疗的方式。反过来,这种整体方法将允许发展公平的公共卫生反应,以确保没有人留下。

贫困是阻碍消除被忽视的热带疾病(如象象病)的最大因素之一。

Because transmission of the infection requires mosquito vectors, the condition is most prevalent in developing equatorial nations including India, Guyana, Malaysia, and most of the African continent. As a result, there is currently insufficient research and development into a treatment for elephantiasis because doing so has been deemed unprofitable.

在更新的范围内,男性患者经常因经济困难而做出关于疾病管理的决定不良。患有象水的男性睾丸周围有淋巴液囊性囊肿,导致肿瘤肿大和不适。因为他们倾向于成为家人的养家糊口,所以这些人选择与这种异常生活在一起,并拒绝寻求医疗建议,因为担心手术可能会使他们无法提供他们的家庭。As for uninfected males, elephantiasis presents at higher rates where fishing, farming, or hunting is their main source of livelihood because these activities often involve sleeping outside, leaving workers vulnerable to mosquitos.

Gender power imbalance plays a significant role in treatment inaccessibility. In many of the countries where elephantiasis is an issue, there is a deep-rooted patriarchy leaving female patients dependent on either their husband or family members to receive funding for proper treatment. In a学习一位参与者指出了来自多米尼加共和国和加纳的妇女,她的配偶,家人和亲密的朋友“花了所有的钱”在她的不成功待遇上后,他们选择不再“到处”。

When somebody sees you, they gaze at you for a long period, as if they have never seen you before. They talk about you like you are not there and move away from you as if afraid。’

The stigmatisation of elephantiasis, however, stretches beyond gender. Too often, patients face social rejection because of their physical appearance. One Domenican women tells the story that even her ‘doctors…treat [her] like [she is] a disgusting person’, leaving her husband responsible for administering required injections. Another Domenican describes how her ‘teacher told [her] to stay away from school’. Inequality in access to both education and healthcare has made it increasingly difficult for sufferers to even dream of becoming self-sufficient with their condition.

As surprising as it may be, on the flipside, there are some patients who有机会接受治疗但出于文化原因而选择不接受治疗。一些患者拒绝遵守处方的抗生素方案,而是选择向礼仪主义者和牧师寻求帮助,而其他人则选择将自己的状况归因于“上帝的旨意”。现代科学与传统之间的鸿沟一直在增长,必须为和解两者所做的更大的努力。

教育的共同主题将许多关键问题联系在一起。缺乏对象症的了解,无论这表现为患者因身体外观而被回避,还是将自己的状况归因于某些更高的权力,通常会导致财务稳定和社交退出。十多年前,一个印度神父与感染一旦他的家乡居民在当地电视频道制定的健康意识计划中注意到他,就被迫辞职。因此,研究表明,大象症的患者认为自己可以为自己提供更好的教育服务,与他们亲近的人和他们的社区在改善患者体验中起着不可或缺的作用,这并不奇怪。

通过交叉镜头查看公共卫生,可以发展整体反应,以应对高度复杂,罕见的疾病。就象症而言,也许不是制药公司像目前那样将抗生素自由捐赠给地方性国家条约可以起草以确保只有在接受政府投资教育或宣传运动的情况下才能提供毒品,并为患有这种情况的个人的生计提供资金。

Elephantiasis is debilitating, painful and difficult for both patients and their loved ones.

However, intersectionality brings us one step closer to eradication of the illness.

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