Eye On Vision Foundation

Dear community,

I am asking if you would kindly consider filling in my questionnaire regarding sensory perception and visual snow. At present I am a third year undergraduate at Sussex university and would like to help visual snow sufferers by contributing to research in the area. It also benefits the research area of brain connectivity. More information is given on the pages provided on this link: https://universityofsussex.eu.qualtrics.com/SE/?SID=SV_73959yicqGpRWGF

Thank you for your time

Katie McKenzie

We are reaching out to patients with visual snow to begin keeping a daily diary to track symptoms. There are no specific guidelines, but some suggestions might be to track how lighting conditions effect your VS, or how foods, activities, anxiety affect how much or how thick and fast your static is? No need to turn your diary in right now, just start keeping track.

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

-------------------------------------------------

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!