Eye On Vision Foundation

SEEKING GERMAN SPEAKING PATIENTS FOR VISUAL SNOW STUDY

Hello Everyone! I have really great news! The Munich IRB has just approved our study and the doctors are starting to recruit now.

They are working through the list of emails that we have received in the last year trying to get in touch with as many patients as possible.

For now, they have only approval for a German consent form - so in the beginning, they will focus on German speaking patients, but the projects in London are coming soon and then they will include English-speaking patients. (This does not mean that you need to be from Germany or live in Germany, but you do need to know how to read and write in German for the purpose of the consent forms.)

For an expedited contact, this email-address was generated and should be used by the German speaking patients who wish to apply:

This e-mail address is being protected from spambots. You need JavaScript enabled to view it

I only have the English version of the initial questions, so I apologize for that considering I'm asking for patients who speak German. I'm hoping that many will speak both. Here is the information that will be helpful for all GERMAN-SPEAKING PATIENTS to send along to the email above.

Name

Address

Date of Birth (Day/Month/Year)

Telephone number


1) Please make a brief statement that you are willing to be contacted for research. This is a European data protection issue.

example:      
"Yes, please keep my contact details and you may contact me for research purposes."


2) Brief description of all symptoms you relate to visual snow syndrome.
  

3) Short description of visual symptoms in own words:

 

4) Visual snow: what type (chose one):

-          black and white (i.e. only black dots on white background, white dots on black background)

-          clear (i.e. color of the background)

-          flashing (i.e. always white, brighter than background)

-          colored

-          all of these


5) Other symptoms (please only answer yes or no)

-          After images

-          Trailing of images in the vision

-          Blue field entoptic phenomenon (i.e. white squiggly lines moving pulsating on the blue sky)

-          Floaters in vision

-          Colored clouds or waves with eyes closed

-          Flashes of light

-          Impaired night vision

-          Sensitive to  light

-          Tinnitus

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I'm so thrilled that this day has come. I have been working with the doctors for nearly a year now to get this back off the ground.

Thank you to all who have applied. Remember, English speaking patients will follow, but for now, only those who speak German, please apply.

Hello Eye on Vision Supporters!

There is a small update on the visual snow research that I wanted to share with everyone. It is in "scientific terms," so may be a little confusing to those who are not familiar with the terminology. You can follow up in the Visual Snow Research group on Facebook for more clarification from the group if needed.

Hypermetabolism and Hypometabolism

The research had not focused on hypometabolism in the initial study. This is another kind of statistical analysis. When looking at hypometabolism, the researchers found the right superior temporal gyrus and the left inferior parietal lobe to be less active in VS than in controls. (This is considered a new finding)

More importantly, the researchers found independent from the PET data that the brain structure of VS patients differs very close to the hypermetabolic area in the lingual gyrus.

The structural difference is really small (but significant). The researchers' finding are from the GROUP-difference of VS and healthy controls and it cannot be identified on an individual MRI…

However, this is important to be identified since such structural and functional congruence points to this area being relevant for VS.

The researchers (Schankin and team) believe that this underlines that the lingual gyrus is of particular importance for VS.

*** The next phase of research is set to begin in a few weeks!!! ***

Donations are always needed and appreciated through:

http://www.gofundme.com/visual-snow

and

http://www.eyeonvision.org

As for our floaters campaign, our very generous anonymous donor made a lot of people smile yesterday by donating $5,000 once the campaign reached it's first $5,000. This brings us to $10,135 as of the time I'm typing this email.

I will be hearing the details of Dr. Sebag's research plan at the end of this month. This is groundbreaking research for vitreous floaters. We are thrilled to be 1/5 of the way to our goal of $50,000.

Would you like to donate and help get us closer?

*** Our donor has promised another $5,000 donation once we reach $15,000. Please help us get there!

The Eye on Vision Foundation is supporting research for a safe non-surgical treatment for vitreous floaters, without the risk of cataract formation, retinal detachment, vitreous frill, glaucoma or other visual risks and side effects.

What are vitreous eye floaters? Eye floaters are spots in your vision. They may look like black or gray specks, strings, lines, clouds or cobwebs that drift about when you move your eyes. While floaters may be non-bothersome for some patients, others have a more severe case, which greatly affect their quality of life. Many patients who suffer with floaters cannot read well, use the computer, spend time outdoors, or drive. Research has also shown that patients with floaters often times suffer from a loss of contrast sensitivity, possibly due to the light scattering that floaters cause.

While the medical community as a whole has taught doctors to treat floaters as benign and a normal part of aging, this condition should not be seen as normal. Billions of dollars are spent in the cosmetics industry to rid people of wrinkles (which is also a normal part or aging), so why wouldn?t research be done to rid people of gray lines and clouds in their vision? Why? Because floaters have yet to be truly recognized as a disease. The Eye on Vision Foundation strives to change this outlook in the medical community.

People are risking their eyesight to try and rid themselves of floaters. There is a surgery that was designed as a ?sight-saving? procedure to reach the retina, which also removes the vitreous. Some floaters, most of the time not all, are removed when the vitrectomy surgery is performed. Patients with severe floaters have flown to other states and countries seeking out this surgery to try and rid themselves of floaters. Even if the surgery goes good, which it doesn?t always, you are guaranteed an early cataract. People is their 20?s are having this surgery because their floaters are that bad. Knowing that they are risking retinal detachment (blinding) and guaranteeing themselves a cataract. Imagine something being so bad with your eyes that you would fly half way around the world and risk blindness just for the chance at some relief. It?s a terrible choice for patients to make, especially the young patients who would normally be decades away from cataracts. Plus, cataract surgery causes floaters, so it is a vicious cycle because in a year or two after the surgery to remove floaters, you will get a cataract, have surgery and get more floaters. It?s almost like a sick joke!

This is why, it is our strong belief that pharmacologic vitreolysis  (the use of drugs) is the safest future cure for vitreous floaters. There was minimal experimentation in 2013 by Dr. Sebag to develop novel enzymes for dissolving floaters, but this work has not continued due to lack of funding. 

In order to develop pharmacologic vitreolysis (drugs) for the purpose of dissolving floaters, adequate tools are needed to evaluate the effects of different drugs at different concentrations for varied durations of exposure. One tool that is needed to evaluate this is a light scattering apparatus. This tool will facilitate both objective and clinical measures of light scattering by floaters as well as the development of a pharmacologic vitreolysis (drug) cure.

I know I?m including a lot of scientific terminology, but it is important for people to be informed. My retina doctor says that I know more about the vitreous and retina than 99.9% of his patients. Trust me, I wish that I didn?t, but I suffer greatly from a severe case of vitreous floaters and have for a decade. They have recently worsened to the point where I spend maybe 5 minutes a day on the computer and I only drive locally and never at night. I?m 36 years old, and there are 80 year olds that see more clearly than I do. I?m 100% dedicated to finding a safe treatment for vitreous floaters. With your help, we can get this very important research started again. Remember, all people will develop floaters. There are many reasons why ? eye injury, the need for distance glasses (myopia), LASIK, prior YAG surgery, cataract surgery or as a natural part of the aging process. The question is to what degree? Will you luck out any get one or two that you barely ever notice or will you be less fortunate and develop 20, 30, or more in each eye that you see even in dim light and with sunglasses on? There is no way to know for sure, but once they are there, they are there to stay. Let?s work together to change that and find a treatment for vitreous eye floaters!

 http://www.gofundme.com/floaters