Systemic capillary leak syndrome
Other Names for this Disease
- Capillary hyperpermeability syndrome
- Capillary leak syndrome
- Capillary leak syndrome with monoclonal gammopathy
- Clarkson disease
- Idiopathic capillary leak syndrome
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Unfortunately, there is no cure for systemic capillary leak syndrome at this time. However, recent studies suggest that taking medication known as beta-adrenergic agonists (including terbutaline) or undergoing immunoglobulin intravenous (IV) therapy may reduce the frequency of attacks and may increase survival in individuals affected with this condition.
Last updated: 9/11/2014
- Gousseff M, Arnaud L, Lambert M, Hot A, Hamidou M, Duhaut P, Papo T, Soubrier M, Ruivard M, Malizia G, Tieulié N, Rivière S, Ninet J, Hatron PY, Amoura Z; Capillary Leak Syndrome Registry. The systemic capillary leak syndrome: a case series of 28 patients from a European registry. Annals of Internal Medicine. 2011; 154:464-471. http://www.ncbi.nlm.nih.gov/pubmed/21464348. Accessed 9/11/2014.
- Finding Treatment Information - A video developed by GARD Information Specialists that explains how you can find information about treatment for a rare disease.
- ClinicalTrials.gov lists trials that are studying or have studied Systemic capillary leak syndrome. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
- The Research Portfolio Online Reporting Tool (RePORT) provides access to reports, data, and analyses of research activities at the National Institutes of Health (NIH), including information on NIH expenditures and the results of NIH-supported research. Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. To search for studies, enter the disease name in the "Text Search" box. Then click "Submit Query".