患有高IgE综合征和曲霉病的患者:患者视频

以下内容摘自ERS

 

在上面的视频中,桑德拉·希克斯(Sandra Hicks)总结了她在原发性免疫缺陷综合症高IgE综合征(HIES)中的经历,以及这种罕见的遗传病和相关的肺部感染如何影响她的生活。作为HIES及其对免疫级联反应的直接结果,Sandra同时管理慢性 曲霉 感染(曲霉病),非结核分枝杆菌感染(鸟分枝杆菌胞内),支气管扩张定植于 假单胞菌 和哮喘。她讨论了这种罕见疾病和感染负担对她的日常生活的影响,包括温度,湿度和抗菌素耐药性等其他因素的影响。

Sandra向希望临床医生治疗其他具有相似疾病特征(包括免疫球蛋白治疗的影响)的人传达了希望。对原发性免疫缺陷和真菌感染的早期,准确诊断;对抗真菌药与其他药物之间潜在相互作用的认识(https://antifungalinteractions.org)。她还讨论了跨学科团队之间以及之间进行全面,及时沟通的重要性。最后,桑德拉(Sandra)强调了联盟医护人员为慢性肺病患者提供支持的价值。

桑德拉此后返回 肺康复 类。这些不仅为COPD患者而且为其他肺部疾病患者提供了巨大益处。使这项服务广泛可用将改善对慢性肺部疾病的管理,甚至可以降低相关的医疗费用。

桑德拉·希克斯(Sandra Hicks)是由患者领导的组织曲霉菌基金会(Aspergillosis Trust)的联合创始人,该组织旨在提高人们对曲霉病的认识。 单击此处访问该小组的网站,以了解有关他们工作的更多信息。 

Rare disease spotlight: interview with an aspergillosis patient and consultant

In collaboration with Medics 4 Rare Diseases, the Barts and the London Immunology and Infectious Diseases society recently held a talk about aspergillosis. Fran Pearson, a patient diagnosed with the condition, and Dr Darius Armstrong, a consultant in Infectious Diseases and Mycology, were both invited to speak at the event. Watch the full talk below to learn more about both the patient’s experience of diagnosis and the challenges faced by doctors when diagnosing patients with infectious diseases.

https://www.facebook.com/BLIDSoc/videos/613592952798238/

Interviews with Patients and Carers

Stories from other patients form an important part of patient support. Many people report that listening to or reading about someone else who has the same infection, and thinking about their experiences, helps them feel less alone as they come to terms with their own illness. 

Carers are not forgotten, they are a very important group who also require support – in fact if we only supported patients we would be neglecting half of the people we need to help. Two of the videos below are given by carers.

If you would like to find more patient and carer stories, have a look at our written stories page.

Patient stories from World Aspergillosis Day

On World Aspergillosis Day (February 1st), the Aspergillosis Trust organised a whole host of activities and awareness campaigns, to mark the occasion. Alongside their very successful Selfie Campaign, and the poster that was displayed on London buses in the run up to the day, the Aspergillosis Trust collected some poignant stories from patients and carers. Click here to read these stories and find out more about what the Aspergillosis Trust does.

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