Affected people may also have branch retinal artery occlusions (BRAO), usually in both eyes. Impairment of vision can occur in some cases; in other cases, people may have no symptoms with the presence of BRAO.
The three main symptoms (encephalopathy, branched retinal arterial occlusions, and hearing loss) are not always present at the onset of the condition, and all three do not necessarily develop in all cases.Susac syndrome can go away on its own, even without treatment. It usually runs its course in two to three years in which people experience recurrent episodes of symptoms. Although it may resolve on its own, some people can develop long-term neurological damage, hearing loss, or vision loss.
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Nonprofit support and advocacy groups bring together patients, families, medical professionals, and researchers. These groups often raise awareness, provide support, and develop patient-centered information. Many are the driving force behind research for better treatments and possible cures. They can direct people to research, resources, and services. Many groups also have experts who serve as medical advisors. Visit their website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.
These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.
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My mother-in-law was just diagnosed with this. Is this condition genetic? See answer
My girlfriend's physicians think that she may have Susac syndrome. Can you provide us with some more information about this disease, particularly how it is treated and what we might expect in terms of prognosis? See answer
My daughter was just diagnosed with Susac syndrome. Can you provide me with information about it? See answer
I would like to learn more about Susac Syndrome. I believe that a family friend may have this condition. I would like to know what test or battery of tests needs to be performed in order to make a conclusive diagnosis of this syndrome or be able to rule it out. I would also like to know what medical facility closest to Raleigh NC has diagnosed and treated this syndrome. See answer
My sister-in-law was diagnosed with Susac syndrome last year. She is currently receiving chemotherapy and IVIG treatments. Are there any other forms of treatment available? See answer