What is the prognosis (outlook) for someone with Susac's syndrome?

Susac's syndrome may follow a different path for everyone. In some people, the syndrome disappears in a few months, even without treatment. In others, symptoms keep coming back even after long-term treatment.

Susac's syndrome usually lasts between six months and five years. Most patients seem to get better after about two to four years. If the symptoms during this period are mild or easily controlled with medications, there may be little or no lasting damage. Some people, however, have severe cases in which there is permanent harm, including dementia, loss of vision, and deafness. Susac's syndrome can also reappear after many years of remission.

Last reviewed by a Cleveland Clinic medical professional on 05/26/2017.

References

  • Susac, JO. Editorial: Susac's Syndrome. Am J Neuroradiology 2004 25:351-352.
  • Genetic and Rare Diseases Information Center (GARD). Susac syndrome Accessed 5/26/2017.
  • Rennebohm R, Susac JO, Egan RA, Daroff RB. Susac's Syndrome--update. J Neurol Sci 2010 Dec 15;299(1-2):86-91. Epub 2010 Sep 19. PMID: 20855088 [PubMed - indexed for MEDLINE]
  • Rennebohm RM, Egan RA, Susac JO. Treatment of Susac's Syndrome. Curr Treat Options Neurol. 2008 Jan;10(1):67-74. PMID: 18325301
  • Susac JO, Egan RA, Rennebohm RM, Lubow M. Susac's syndrome: 1975-2005 microangiopathy/autoimmune endotheliopathy. J Neurol Sci 2007 Jun 15;257(1-2):270-2. Epub 2007 Feb 28. Review. PMID: 17331544 [PubMed - indexed for MEDLINE] [PubMed]
  • Rennebohm RM, Susac JO. Treatment of Susac's syndrome. J Neurol Sci 2007 Jun 15;257(1-2):215-20. Epub 2007 Feb 26. Review. PMID: 17324441 [PubMed - indexed for MEDLINE]
  • Rennebohm RM, Lubow M, Rusin J, Martin L, Grzybowski DM, Susac JO. Aggressive immunosuppressive treatment of Susac's syndrome in an adolescent: using treatment of dermatomyositis as a model. Pediatr Rheumatol Online J 2008 Jan 29;6:3. PMID: 18230188 [PubMed]

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