Rare Disease Day: Visual Snow

So lets talk about my rare disease. I suffer from Visual Snow. I cannot find any statistics or community about my disease. Visual Snow is a 24/7 neurological disease that causes visual symptoms, like seeing snow or tv static. It also causes increased light sensitivity, seeing after images and trails, fatigue, tinnitus cognitive dysfunction and some others. It can lead to anxiety and depression.

 

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My “suffering the silence” portrait. http://sufferingthesilence.com/

I have a hard time getting doctors to take me seriously because of this condition. No one has answers and there are no tests. No studies are being done in the US (as far as I know).

It is hard to live with this disease because it is widely misunderstood. It affects my most important senses (sight & hearing) as well as my brain. I have a hard time seeing through the snow and visual disturbances. I have a hard time hearing because of the tinnitus and sound sensitivity. I have trouble with thinking, forming thoughts and words, and then communicating those thoughts coherently. I often feel like I am trapped inside my own head, unable to see, hear or effectively communicate with the world around me.

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An example of VS. https://en.wikipedia.org/wiki/Visual_snow

 

I have special doctor recommended glasses to try and tone down some of the symptoms. They block about 20% more light than normal sunglasses, and have a purple tint that’s helping me deal with some afterimages, contrast issues and a small amount of snow. These glasses are allowing me to gain some of my visual functionality back.

There is no cure and no treatment that has been proven to work. Experts don’t even know which part of the brain it comes from. I can only hope that it doesn’t get worse as I continue to struggle through every day.

Here’s a video that made me cry REAL TEARS the first time I watched it. It (almost) perfectly describes my vision. Add in a large amount of mystery scotoma and more colored halos etc. and that’s pretty much how I see.

 

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4 thoughts on “Rare Disease Day: Visual Snow

  1. Good luck with finding the right help. I just looked on Amazon about this – and found nothing. 😦 there must be someone somewhere who specializes in this health field. Just a thought…why not go to newspapers / magazines (basic women’s mags and those specializing in health)? To get your story out will reach thousands of people.

    Like

    1. I am really shy and I have a hard time with attention being on me, so for thousands of people to hear my story is a little intimidating! I think I am working up to it though. By keeping regular updates and talking to ppl on here I think I might work myself up to talking to media. It’s a slow process but maybe someday soon!

      Liked by 1 person

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