Hello dear Neurologists, I suffer from a rare and often misdiagnosed neurological condition, that has impacted my life more than I could put into words. Its a condition where people see constant static in their vision, get ringing in their ears (static) , start to see everything they glance at twice (after images/palinopsia) , get pain when looking at lights (photophobia), have trouble reading because text starts to shake and start to experience other visual anomalies like green spots in their vision. The list of symptoms are numerous and outright bizarre. Its called: Visual Snow Syndrome. Its just recently getting researched by Dr. Schankin and Dr. Goadsby, who were recruited by The Eye on Vision (eyeonvision.org/) a foundation dedicated to achieve research and future treatment for this disabling condition. See quote: These patients, for those who haven’t seen them, are devastated and lonely. Some can’t drive, some can’t work, some can’t read books, some can’t use computers. They are a wreck ... and there is nobody out there who is owning this condition – I don’t know if it falls in the realm of neuro-ophthalmology or neurology or headache, and what to do with these poor folks. ...They have been banished to the realms of psychiatry and have been told they have functional disorders and other things, when it is very clearly a widespread neurological perceptual disturbance. Dr Schankin august 2012 Because of those two neurologists, groundbreaking works has been done: they found the location where the visual abnormalities originate from in the brain: the lingual gyrus inside the visual cortex. The only problem we have now is that Dr. Schankin and Dr. Goadsby need more funding to progress their research further, which hopefully will lead to future treatment strategies. We need more money. This condition isnt being funded by the government. Could you PLEASE help us? With spreading the research? Or getting fundings by your university/hospital? (etc) This is the gofundmepage, which gives an accurate description of the condition and why we are trying to obtain money for the research of Dr. Schankin and Dr. Goadsby. Link: gofundme/visual-snow And this is a personal video of the founder of The Eye on Vision, Jen Ambrose, explaining what people like her have to go through on day to day basis and it explains why Dr. Schankin and Dr. Goadsby need money to further progress the research for this disabling condition. Link: youtu.be/Gk3d6mp2nMY Scientific publication about this condition can be found here. Link: onlinelibrary.wiley/doi/10.1111/head.12378/full I hope to hear from you, thanks you in advance for considering my request. With kind regards, Ben Wigmans (from The Netherlands)
Posted on: Sat, 02 Aug 2014 01:09:46 +0000
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