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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Susac syndrome


Other Names for this Disease
  • Retinocochleocerebral vasculopathy
  • SICRET (small infarction of cochlear, retinal, and encephalic tissue) syndrome
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Treatment


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How might Susac syndrome be treated?

Early, aggressive, and sustained treatment of Susac syndrome is recommended to avoid or minimize neurological damage, hearing loss, and/or vision loss. Treatment includes medications that suppress the activity of the immune system (immunosuppressive agents) such as steroids and intravenous immunoglobulins. Other drugs may also be necessary.[1][2][3]
 
For those with significant hearing loss, a specific type of hearing aid called a cochlear implant may be an option.
Last updated: 4/25/2011

References
  1. Susac syndrome. Orphanet Database. http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=838. Accessed 4/25/2011.
  2. Susac JO, Egan RA, Rennebohm RN, Lubow M. J Neurol Sci. June 15, 2007; http://tinyurl.com/yph8kg. Accessed 12/18/2008.
  3. Rennebohm, Robert; Susac, John. Journal of Neurological Sciences. February 26,2007; http://www.ncbi.nlm.nih.gov/pubmed/17324441. Accessed 1/1/1900.


Clinical Trials & Research for this Disease

  • ClinicalTrials.gov lists trials that are studying or have studied Susac 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. Currently there is a research study titled Endothelial-Reactive Antibodies: A diagnostic test for Susac's syndrome. Click on the study title for further information on the study.