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马凡综合征累及一个家族的四代人,无眼部受累。

Marfan syndrome affecting four generations of a family without ocular involvement.

作者信息

Bridges A B, Faed M, Boxer M, Haining W M, Pringle T H, McNeill G P

机构信息

Department of Cardiology, Ninewells Hospital and Medical School, University of Dundee, UK.

出版信息

Postgrad Med J. 1991 Jun;67(788):538-42. doi: 10.1136/pgmj.67.788.538.

Abstract

Thirty eight relatives of a patient with Marfan syndrome were screened for the presence of this disorder. Marfan syndrome was newly diagnosed in living members of 4 generations in this family without evidence of ocular abnormality in any. After screening, 10 relatives were newly diagnosed as having definite, and 5 relatives as having possible, Marfan syndrome. Family screening has drawbacks as well as benefits for the patients. The main benefit is the identification and treatment of previously undiagnosed patients at risk of cardiac complications which are the major cause of mortality. The drawbacks include employment problems created for patients with Marfan syndrome as a direct consequence of our screening programme and the anxiety induced in previously asymptomatic family members who did not realize that they could be at risk. Also, the 4 adult patients with possible Marfan syndrome found it difficult to accept that a definite diagnosis could not be reached after they had been invited to attend a screening programme for a serious genetic disorder. This report illustrates the importance of screening all the relatives of a patient with Marfan syndrome to identify previously undiagnosed cases. However, before screening a family, the physician should be aware that a clear diagnosis may not be reached in all patients, and financial, psychological or social problems may arise as a result of the screening programme.

摘要

对一名马凡氏综合征患者的38名亲属进行了该疾病筛查。该家族4代在世成员中新诊断出患有马凡氏综合征,且所有人均无眼部异常迹象。筛查后,10名亲属被新诊断为确诊马凡氏综合征,5名亲属被诊断为可能患有马凡氏综合征。家族筛查对患者而言既有好处也有弊端。主要好处是识别并治疗此前未被诊断出的有心脏并发症风险的患者,而心脏并发症是主要死因。弊端包括因我们的筛查项目直接导致马凡氏综合征患者出现就业问题,以及让此前无症状的家庭成员产生焦虑,因为他们并未意识到自己可能有患病风险。此外,4名可能患有马凡氏综合征的成年患者在受邀参加严重遗传疾病筛查项目后,难以接受无法确诊的结果。本报告说明了筛查马凡氏综合征患者的所有亲属以识别此前未被诊断出的病例的重要性。然而,在对一个家族进行筛查之前,医生应意识到并非所有患者都能得到明确诊断,且筛查项目可能会引发财务、心理或社会问题。

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