Hoffmann Björn, Mayatepek Ertan
Klinik für Allgemeine Pädiatrie, Universitätsklinikum Düsseldorf, Heinrich-Heine-Universität, Düsseldorf, Germany.
Dtsch Arztebl Int. 2009 Jun;106(26):440-7. doi: 10.3238/arztebl.2009.0440. Epub 2009 Jun 26.
Data obtained from screened newborns and from persons at known risk for Fabry disease suggest that this condition is much more common in Germany than previously assumed. Its clinical manifestations are very diverse, and its differential diagnosis is correspondingly broad. Thus, there is often a delay before the diagnosis of Fabry disease is established.
Selective literature search with special attention to studies of large groups of patients with respect to clinical manifestations, diagnostic evaluation, and treatment.
The number of patients carrying the diagnosis of Fabry disease in Germany lies far below what would be expected from published prevalence figures from other countries. Angiokeratoma, acroparesthesia, hypertrophic cardiomyopathy, impaired sweating and corneal opacification (cornea verticillata) are typical manifestations of Fabry disease; many patients also have other, nonspecific complaints, such as gastrointestinal disturbances. It has been clearly shown that women can manifest the entire range of clinical manifestations. Studies involving large groups of patients have improved our understanding of hearing impairment and tinnitus in Fabry disease. Therapeutic trials are currently in progress to determine whether enzyme substitution can delay the occurrence of life-threatening sequelae such as progressive renal failure and cerebrovascular events.
Fabry disease is still underdiagnosed. The average delay from the onset of symptoms to diagnosis is more than a decade. Treatment with human alpha-galactosidase A produced with genetic technology can improve most of the disease's manifestations.
从筛查新生儿以及已知患有法布里病风险的人群中获得的数据表明,这种疾病在德国比之前认为的更为常见。其临床表现非常多样,相应地鉴别诊断范围也很广。因此,法布里病的诊断往往会延迟。
进行选择性文献检索,特别关注关于大量患者的临床表现、诊断评估和治疗的研究。
德国确诊法布里病的患者数量远低于根据其他国家公布的患病率数据所预期的数量。血管角质瘤、肢端感觉异常、肥厚型心肌病、出汗障碍和角膜混浊(涡状角膜)是法布里病的典型表现;许多患者还伴有其他非特异性症状,如胃肠道紊乱。已有明确证据表明女性可表现出全部的临床表现范围。涉及大量患者的研究增进了我们对法布里病听力障碍和耳鸣的理解。目前正在进行治疗试验,以确定酶替代疗法是否能够延缓危及生命的后遗症(如进行性肾衰竭和脑血管事件)的发生。
法布里病仍未得到充分诊断。从症状出现到诊断的平均延迟超过十年。采用基因技术生产的人α-半乳糖苷酶A进行治疗可改善该病的大部分表现。