[秘鲁遗传性血管性水肿患者协会成员登记处]。

Oscar Manuel Calderón-Llosa, Danny Muñoz-Campos, Margarita Olivares-Gómez
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引用次数: 0

摘要

目的:报告秘鲁 HAE 患者协会的登记情况:报告秘鲁 HAE 患者协会的登记情况:我们使用了拉丁美洲 HAE 委员会的调查问卷。结果:我们报告了 63 名患者的数据,其中 51 名女性,12 名男性:我们报告了 63 名患者的数据,其中 51 名女性,12 名男性,年龄在 6 至 74 岁之间。其中 9 人未满 18 岁,5/9 人在 6-13 岁之间。45 名 HAE C1-INH I 型患者,12 名 HAE-FXII 型患者,5 名 HAE UNK 型患者,1 名 AAE 型患者。56/62 名 HAE 患者的平均发病年龄为 16.8 岁。在 50/62 名成年 HAE 患者中,平均诊断延迟时间约为 19.3 年。实验室检测:我们可以进行 C4 补体 C1 抑制剂抗原和功能检测。治疗:患者可使用氨甲环酸(TA)和减效雄激素。我们没有登记特定的长期预防治疗。我们使用中等/高剂量的氨甲环酸(TA),大多数患者可在24小时内静脉注射6克氨甲环酸,我们在HAE急性危象开始时立即开始治疗,这有助于减轻HAE发作的症状,在几天内缓解症状并降低发作频率:我们目前有 63 名秘鲁遗传性血管性水肿患者协会成员。我们改进了用于诊断遗传性血管性水肿的血液检测方法。中等剂量和高剂量的氨甲环酸分别用于预防和急性危象,反应良好。在患者协会中,没有因HAE危象而死亡的报告。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
[Registry of Members of the Association of Patients with Hereditary Angioedema of Perú].

Objective: To report the registry of the HAE Peruvian patient's association.

Methods: We used the questionnaire of the Latin American HAE committee. Consent was requested from the patient's association to report the data.

Results: We report data of 63 patients, 51 Female, 12 Male, range age between 6 to 74 years. Nine under 18 years old, 5/9 between 6 to 13 years. Forty-five HAE C1-INH type I, 12 HAE-FXII, 5 HAE UNK, 1 AAE. Symptoms onset average age in 56/62 HAE patients was 16.8. In a group of 50/62 adult HAE patients, the average diagnostic delay approximately was 19.3 years. Laboratory tests: we can perform C4 complement C1-inhibitor antigenic and functional tests. Treatments: The patients have access to tranexamic acid (TA) and attenuated androgens. We do not have registered specific long-term prophylaxis treatments. We used moderate/high doses of TA, in most patients up to 6 gr i.v./in 24 hours, we start with the treatment immediately the HAE acute crisis is beginning, it helps to the HAE attacks are less symptomatic, resolves in a few days and decrease the frequency.

Conclusions: We present 63 members of the Association of Patients with Hereditary Angioedema of Perú. We have improved blood tests for HAE diagnosis. Moderate and high doses of Tranexamic Acid are used for prophylaxis and acute crisis respectively, with acceptable response. No deaths have been reported due to HAE crisis in the patient's association.

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