Susac Syndrome: Symptoms and Treatments for a Rare Disorder
HTML-код
- Опубликовано: 7 дек 2016
- WORLD PREMIERE! Filmmaker James Huffman teamed up with long time family friend Nancy Goldhamer to create a short film designed to help raise awareness about a rare disorder known as Susac Syndrome. Nancy was diagnosed with Susac Syndrome in 2000.
My pregnant wife has been diagnosed with the Susac Syndrome this week. Luckily she is on a methylprednisolone and IVIG treatment immediately. Thank you for creating this video, this really provides hope. If there is anyone from the Netherlands watching this video that suffers from the same symptoms please contact the UMC in Amsterdam, they have experience with the Susac Syndrome and treatment.
My 19 yr old grandson diagnosed last week!!! ITS BEEN A HORRIFYING MONTH UNDER SOME OF THE BEST DRS IN THE WORLD🥲🙏🙏 THEY KEPT SAYIN MS. BUT WHEN THE SIXTH DR CAME IN! We HAVE ANSWER. SENDING LOVE TO ALL OF U GOD BLESS! IM READY FOR THE LONG HAUL!!! 😘
I have confusion, hearing loss and vision problems... But my hearing and vision loss isn't permanent. I always recover from those issues. The confusion is progressive, I have a single brain calcification but no other legions and a slight hind brain herniation. Plus headaches, bleeding issues, limb spasticity, numbness/tingling, poor thermoregulation (fevers when I do anything and a low temperature when I doing nothing), episodes of tachycardia, loud chronic joint crepitus (especially in my neck) and so many more symptoms that I can't even remember most of them!
Susac syndrome seemed to make some sense when I heard that is mimics MS, but after hearing these stories I don't think it fits. MS also doesn't explain my bleeding and other skin problems although the petechiae on my arms has vanished recently.
I've been looking for answers for over five years and doctors just write it all off as anxiety and stress. Makes me wonder why they get paid so much. It's aggravating.
I’m so sorry and I hope you have figured your issues out by now
@@Asifyoucouldoutrunme143
Thanks, I'm still searching for an answer, unfortunately.
Could be related to a recently uncovered brain legion.
The video is informative, but I don't think the background music is necessary. It's very likely that some of your audience are already suffering from Susac Syndrome - the music just makes it more difficult to hear the important information.
Thanks for the knowledge though.
ron sharp and theresa are role models for humanity, they are the jacques cartier of susac syndrome even the descartes! they are gonna be my role models forever, thanks for making this video in the name of everybody that have this shit ass disease
My husband has been through a battery of testing...diagnosed with pseudo seizures strokes brugata II. His attacks starting 4 years ago after a car accident caused by what they said was a stroke... match EVERY symptom pointing to this disease. They seem to be triggered by anxiety or stress of some sort!Where do I start with specialists? Opthamology? Neuropthamology?
Now we know what was the cause of Spanish painter Goya’s deafness?
Spanish quixotic artist Francisco Goya was the most central and known Spanish artist of late 18th and early 19th centuries. In 1793, an acute and undiagnosed syndrome left him wholly deaf at the age of 46. For years, scholars had a hunch that he might had had lead poisoning due to paints or gone through bacterial meningitis or syphilis. However, at last following 200 years, savants finally managed to expose the exact disease that troubled the Spanish painter, which is an autoimmune illness known as Susac’s syndrome that affected his hearing. Following a stroke which left him paralyzed on his right side, Goya died and was buried on 16 April 1828 at the age of 82.(1)
What exactly is Susac’s syndrome?
It is an exceptional condition that triggers folks’ immune structure to influence small blood vessels in the brain, retina and inner ear. Adverb headaches, trouble in thoughts, psychiatric concerns and loss of vision, balance and hearing are the most widespread symptoms of this chaos. As per the panel of investigators from the University of Maryland in the US, Goya went through the symptoms such as headaches, giddiness, hallucinations, vision troubles and ringing in his ears.
Harboring on the matter, author of study from the said varsity, Ronna Hertzano holds that Susac’s syndrome has the potential to cause permanent hearing loss. Following a stroke which left him paralyzed on his right side, Goya died and was buried on 16 April 1828 at the age of 82.(1)
soure:
Now we know what was the cause of Spanish painter Goya’s deafness?
By News Desk - Wednesday, May 3, 2017 10:30 pm
AIMAN INAM
www.newspakistan.tv/now-know-made-spanish-painter-goya-deaf/
hello everyone, my uncle was diagnosed with susac syndrome 1.5 years ago. he is from the Netherlands. we are now being told by his doctors that it is only getting worse. I would like to get in touch with a doctor who has experience with this. or with someone who has had susac syndrome. Sincerely, hamid
hello from Saud
My neurologist wants to rule this out. I have two cotton wool spots in my right eye. I was told a BRAO. I spent time I. The hospital and they diagnosed me with a TIA. I have a hearing test this Wednesday… I just want someone to talk to about this…
I believe my boyfriends having the triad of symptoms and we have been on the diagnosis search for 9 months and after many hospitals we r left with maybe auto immune and that's when I found Susac syndrome online and I can't get his local doctors to help. The Mayo Clinic is fully booked for a year. Please any information would be helpful. Where should we go and I need to have him seen soon.
contact Dr. Robert Rennebohm @ Cleveland Clinic. He's head of Susac Syndrome Clinic there. He responds to emails quickly.
My Wife have this disease
My mom has susac