Susac Syndrome . . . Anyone know anything about it?

Hello @rubie, It's been a few years since you last posted. I know how overwhelming it must be to receive another diagnosis of such a rare disorder. While we wait for members with experience to respond, I thought I would share the Genetic and Rare Diseases Information Center site which has a lot of information on the condition:
--- Susac syndrome - Living with the Disease: https://rarediseases.info.nih.gov/diseases/7713/susac-syndrome/living.

Did your doctor discuss any treatment options or suggestions?

@rubie wow, you have a lot of AD. Have any of the doctors given you any ideas about why you have so many? So, this new disease seems to be quite rare. I know that @johnbishop gave you a link to the National Organization for Rare Diseases. NORD is a great organization that tries to help those with rare diseases. I would encourage you to call them. Their phone number is on their web page. I think they will be able to give you some information that you want. I listened to a webinar, given by NORD, and everyone was so helpful
https://rarediseases.info.nih.gov/contact/
Do you think you could call them?

Thanks for your response! I do indeed, have a very widespread variety of vascular/auto-mmune issues . .. . my doctors say they are going to write me up in medical journals someday! LOL. I was exposed very heavily to jet fuel back in the early 1980's when my issues first started (lived on road in back of Naval Air Station in Fallon, Nevada -training center for Top Gun pilots - . . . .they dumped jet fuel on a daily basis as they landed over the pastures where I was riding horses all day on my ranch. Every night, I had a sheen on my skin from the fuel.) There has been a fleeting thought that this disrupted my auto--immune system, but nothing has ever been proven. It just seems that I keep adding more and more all the time. This latest Susac dx is a real shocker . .. never heard of it . . . very neurological, and very scary. Neuro says it is VERY rare. I have an appointment scheduled at Vanderbilt, but it is not until August . . unless I get in on a cancellation before then. I will indeed take your suggestion and call NORD . . . I am the type of personality that wants to know what I am dealing with. Definitely helps me keep my fears more under control. I am 78, always SO incredibly strong (horse/goat farmer), and this has knocked me to my knees!

Recently diagnosed with extremely rare Susac Syndrome and unable to find ANYPLACE that knows treatment protocol. Local neurologist seems to have me on very conservative steroid regimenj, but from limited information, I understand that immediate and aggressive treatment is vital. Thought Vanderbilt was going to be my go to, but hearing much about lack of knowledge there on even more basic vascular/neurological issues. I am VERY scared! How do I get into a treatment program as quickly as possible?

New diagnosis, Susac Syndrome, VERY rare. Looking for someone, ANYONE, ever diagnosed with this. I am very scared, confused, and lost. HELP!

Hi @rubie, both Mayo Clinic and Cleveland Clinic have multidisciplinary specialist teams that treat susac syndrome.

See this information
- https://my.clevelandclinic.org/departments/susac-syndrome#program-tab

To inquire about requesting a consult at Mayo Clinic, start here: http://mayocl.in/1mtmR63

Thank you! Had no idea that Vleveland had a Susac program. Will be calling tomorrow!