Visual Chaos

I in another tread i have talked about my battle with Visual Snow. A rare and not even close to being understood condition that I have had for at least three years or more. I wanted to share with everyone something from a LiveJournal account I wrote recently on the subject. Wanted to get some thoughts and feed back.

http://exer.livejournal.com/3444.html

My thanks to everyone who takes the time to check this out.

That's an interesting read Rylen. I have never heard of it before and I think you did a good job of explaining what it is and how if affects you. Is this a pretty rare condition?

Good read. Definitely gives you some sort of understanding, as close as one can come without having the condition oneself. And honestly, takes a lot of strength to not let such a thing define you, and just deal with it as best as you can. So honestly, kudos.

I also see on Facebook a lot of your posts about the few organizations looking at this. Honestly, makes me wonder if anyone in this medical-research rich area of Boston is looking at this condition.

S4Blade wrote:

Is this a pretty rare condition?

Very rare. Or at least not widely known. Even UofM Ann Arbor doesn't have a full clue as to what it is.

Wolf: As it stands right now. Their are only two doctors in the world looking at this condition. Eye on Vision Foundation is trying to raise 50K to work on the next phase of the research. But unless something radical happens treatments won't be with in my life time. I don't think any other doctors accept this as a legit medical condition. Even though it seems to be connected with Tinnitus.

Very interesting subject and journal writing Rylen. I hope the research and the knowledge of this condition becomes more prominent as time goes on. I personally had never heard of it until reading your posts here. People need to be aware of it and to know that others are suffering with it and to learn how they can help, if anything. The remark about the fear and anxiety really touched me. I can understand a little bit of that remark and experiencing feelings of fear and anxiety when I was suffering from Panic Attacks not to long ago, although I know your situation is so much worse than just panic attacks. It is scary to experience something like that. Just wondering, Is this journal writing a one time piece or do you plan to continue writing your journey with this in a continuing journal for others to read? I would think that writing about it might help somehow if only just a little.

I've been debating about doing some more writing on the subject for the Exer account. I have found writing this has been a bit of a release for me. Because I now have something that I can share with family and friends to give them a better understanding of what is that I deal with. This stuff is scary as heck. It doesn't stop me too often. But their are days when I just want to hide under the covers.

Their is away for people to help.

Their is a group right now called Eye On Vision Foundation based in Orlando, FL run by a woman named Jen Ambrose. Someone who is dealing with a much worse case of VS than me. Right now she is trying to raise 50K to help with the next phase of research. In 21 days they have already secured over 16K in donation.

http://www.gofundme.com/visual-snow I can verify that the charity is legit. It's even part of Amazon Smile (Eye on Vision Foundation).