遗传性血管性水肿的治疗:护理的进展和差距

Q3 Medicine
Robin Lochbaum, Petra Staubach-Renz
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引用次数: 0

摘要

遗传性血管性水肿(HAE)是一种罕见的遗传性疾病,可引起身体各部位突然和反复肿胀。在呼吸道,这些发作可能危及生命。由于无法预测发作的时间、地点或严重程度,受影响患者的生活质量往往受到严重损害。近年来和几十年来取得了重要的治疗进展。例如,自我给药的可能性使受影响的人能够对HAE发作迅速作出反应。另一个里程碑是长期预防的建立,这可以保证一些患者在很长一段时间内不受攻击。尽管取得了这些进展,但所有受影响的人都需要随身携带用于急性治疗的药物。患者群体是非常异构的,总是需要个性化的治疗计划在每个情况下。重要的是要使管理方案适应各自的生活情况,这可以在任何时候完成。在实践中,治疗概念的实施可能伴随着各种挑战。本出版物将根据现有数据和我们自己的经验对这些问题进行讨论,以突出患者和从业者面临的问题,以及如何消除或克服这些障碍。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
Treatment of hereditary angioedema: advances and gaps in care

Hereditary angioedema (HAE) is a rare genetic disorder that can cause sudden and repeated swelling in various parts of the body. In the respiratory tract, these attacks are potentially life-threatening. Since neither the timing of the attacks nor their location or severity can be predicted, the quality of life of affected patients is often severely impaired. Important therapeutic advances have been made in recent years and decades. For example, the possibility of self-administering medication has enabled those affected to respond quickly to HAE attacks. Another milestone was the establishment of long-term prophylaxis, which can guarantee freedom from attacks over a long period of time for some patients. Despite these advances, all affected individuals are required to always carry medication for acute treatment. The patient population is very heterogeneous and always requires individualized therapy planning in each case. It is important to adapt the management options to the respective life situations, which can be done at any time. In practice, the implementation of the therapy concept can be associated with various challenges. These will be discussed in this publication based on available data and our own experience to highlight the problems faced by patients and practitioners and how these barriers can potentially be removed or overcome.

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来源期刊
Allergo Journal International
Allergo Journal International Medicine-Immunology and Allergy
CiteScore
4.60
自引率
0.00%
发文量
31
期刊介绍: Allergo Journal International is the official Journal of the German Society for Applied Allergology (AeDA) and the Austrian Society for Allergology and Immunology (ÖGAI). The journal is a forum for the communication and exchange of ideas concerning the various aspects of allergy (including related fields such as clinical immunology and environmental medicine) and promotes German allergy research in an international context. The aim of Allergo Journal International is to provide state of the art information for all medical and scientific disciplines that deal with allergic, immunological and environmental diseases. Allergo Journal International publishes original articles, reviews, short communications, case reports, and letters to the editor. The articles cover topics such as allergic, immunological and environmental diseases, the latest developments in diagnosis and therapy as well as current research work concerning antigens and allergens and aspects related to occupational and environmental medicine. In addition, it publishes clinical guidelines and position papers approved by expert panels of the German, Austrian and Swiss Allergy Societies. All submissions are reviewed in single-blind fashion by at least two reviewers. Originally, the journal started as a German journal called Allergo Journal back in 1992. Throughout the years, English articles amounted to a considerable portion in Allergo Journal. This was one of the reasons to extract the scientific content and publish it in a separate journal. Hence, Allergo Journal International was born and now is the international continuation of the original German journal. Nowadays, all original content is published in Allergo Journal International first. Later, selected manuscripts will be translated and published in German and included in Allergo Journal.
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