University of Calgary

About Us

History

In 1975 Dr. Susac saw a young woman with a previously unreported combination of problems---a clinical triad of:

  • Encephalopathy
  • Branch retinal artery occlusions (BRAO)
  • Deafness

Shortly thereafter, Dr. John Selhorst referred to Dr. Susac a 40 year old woman with an identical set of clinical findings. 

In 1979 Drs. Susac, Selhorst, and John Hardiman (the neuropathologist at the Armed Forces Institute of Pathology who interpreted the brain biopsy in the Selhorst case) published a report of these two cases.  The title of the report was Microangiopathy of the Brain and Retina.

In 1986, Dr. Susac presented a 26 year old woman with this syndrome to the Dr. William Hoyt at a Neuro-ophthalmological Symposium held in Dr. Hoyt's honor in San Francisco.  When Dr. Hoyt, one of the nation's most eminent neuro-ophthalmologists, saw the branch retinal artery occlusions, he announced the diagnosis as "Susac's Syndrome." 

Because the syndrome is very commonly misdiagnosed as "atypical multiple sclerosis (MS)," Dr. Robert Daroff, then Editor-in-Chief of  the medical journal Neurology, asked Dr. Susac to write a brief article on the syndrome for neurologists (1994).  Dr. Daroff insisted that the article be entitled "Susac's Syndrome."  The disease has been called "Susac's Syndrome" ever since.

Since the initial report, approximately 123 articles have been written about Susac's Syndrome, and these articles have documented the disease in a total of approximately 208 patients from around the world.  More than half of these articles and cases have been published since January 2004.

In 2005, at a Susac's Syndrome Symposium organized by Dr. Martin Lubow at Ohio State University, Dr. Rennebohm presented to Dr. Susac a case of an adolescent with Susac's Syndrome.  At that symposium a concept of emphasis was that Susac's Syndrome represents an "autoimmune endotheliopathy" and that the immunopathogenesis and treatment of juvenile dermatomyositis might serve as a helpful model in better understanding, treating, and studying Susac's Syndrome.

By 2008 it became obvious to Drs. Susac, Rennebohm, and Robert Egan (Chairman of the Susac's Syndrome Committee of the North American Neuro-ophthalmology Society---NANOS) that an International Collaborative Study of Susac's Syndrome would be the most effective and efficient way to increase knowledge about Susac's Syndrome.  Accordingly, the three have teamed up to create this website to facilitate the Susac's Syndrome International Collaborative Study (Susac-ICS).  The website is also intended to serve as a major source of education about Susac's Syndrome---for physicians, patients, families, and friends. 

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