Intersectionality and Elephantiasis: A Case Study

orphanet稀有疾病杂志is proud to present this article by Gavin Choong, a runner-up entry inbeacon for rare diseasesMedics4RareDiseases'"Student Voice" contest.

在前几十年中,获得现代医疗保健的机会有所改善,但患者(尤其是那些因罕见疾病而苦苦挣扎的患者)仍然经历制度化的歧视和边缘化。就是这样象症, a parasitic infection which causes enlargement of arms, legs, and external genitalia due to lymph fluid accumulation in affected areas. While a permanent cure for the disease is not yet available, it has been found that antibiotic treatment at early stages kills worm larvae before symptoms become severe. Intersectionality provides an analytical framework, examining how patient identity (gender, occupation, culture, education, and socio-economic status) shapes the way in which treatment for elephantiasis is received. In turn, this holistic approach will allow for the development of equitable public health responses, to ensure no-one is left behind.

Poverty is one of the largest factors hindering significant progress in the eradication of neglected tropical diseases such as elephantiasis.

由于感染的传播需要蚊子媒介,因此在发展包括印度,圭亚那,马来西亚和大多数非洲大陆在内的赤道国家中,这种情况最为普遍。结果,目前没有足够的研究和发展用于象象症的治疗,因为这样做是无利可图的。

On a more local scale, male patients often make poor decisions regarding disease management due to financial hardship. Men with elephantiasis present with hydroceles – lymph fluid-filled sacs surrounding their testicles, causing enlargement and discomfort. Because they tend to be the breadwinners for their family, these men choose to live with this abnormality and refuse to seek medical advice out of fear that surgery might leave them unable to provide for theirhousehold。至于未感染的雄性,象征性的捕捞,耕种或狩猎是其主要生计的来源,因为这些活动通常涉及在外面睡觉,使工人容易遭受蚊子的影响。

性别能力不平衡在治疗难以及性中起着重要作用。在许多问题是一个问题的国家中,有一个根深蒂固的父权制,使女性患者依靠丈夫或家人获得适当治疗的资金。在一个studyconducted involving women from the Dominican Republic and Ghana, one participant reported that after their spouse, family, and close friends had ‘spent all their money’ on her unsuccessful treatment, they chose not to ‘come around’ any longer.

当有人看到您时,他们长时间凝视着您,好像他们以前从未见过您一样。他们谈论你,就像你不在那儿,远离你,好像害怕。’

然而,象征性的污名超出了性别。病人经常因身体外观而面临社会拒绝。一位多米尼克妇女讲述了一个故事,即使她的“医生……对待[她)[她]是一个令人恶心的人”,使她的丈夫负责管理所需的注射。另一位多米尼克(Domenican)描述了她的“老师告诉她要远离学校”。接受教育和医疗保健的不平等使患者甚至梦想着自己的状况变得自给自足。

尽管可能令人惊讶,但在另一个病人中havethe chance to receive treatment but choose not to for cultural reasons. Some sufferers have refused to abide by prescribed antibiotic regimens and instead opt to seek help from ritualists and priests, while others have chosen to attribute their condition to the ‘will of God’. The divide between modern science and tradition is ever growing, and greater effort must be put towards reconciling the two.

The common theme of education ties together many key issues addressed. A lack of understanding about elephantiasis, whether that manifests as patients being shunned for their physical appearance or attributing their condition to the doing of some higher power, often results in a loss of financial stability and social withdrawal. Such was observed when, more than a decade ago, an Indian priest with theinfectionwas forced to quit his job once residents of his home village noticed him on a health awareness programme made by a local television channel. It is therefore no surprise that studies have shown sufferers of elephantiasis believe access to better educational services for themselves, those close to them and their community plays an integral role in improving the patient experience.

通过一个交点的看着公共卫生lens allows for the development of holistic responses to tackle highly complex, rare diseases. In the case of elephantiasis, perhaps instead of pharmaceutical companies freely donating antibiotics to endemic countries as they currently are,treatiescould be drafted to ensure drugs are only provided if a recipient government invests in educational or awareness campaigns, as well as sets aside funding for the livelihood of individuals suffering from the condition.

对于患者及其亲人而言,象征性衰弱,痛苦和困难。

但是,交叉性使我们更接近根除疾病。

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