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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.
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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! |
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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 |
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I have heard from Dr. Schankin and Prof Goadsby today. They have found a physician who will start early next year. This doctor will most
likely be a full-time researcher for visual snow syndrome. Unfortunately, there are
still administrative issues to be solved, and this takes time. So research will not get off the ground for several more months. The research will take
place in Munich and London (not the U.S. this time). Some of what we will see in 2015 involved with visual snow research will be brain imaging,
electrophysiological testing, pharmacological studies and the first
treatment trials. While US patients are not ruled out, there would be the jet lag problem like last time, so they would need to plan to spend about 2 weeks in Europe if interested in participating.
It will be several more weeks until I have anything else to share as
Dr. Schankin and Prof. Goadsby and trying to set up a meeting with the
new doctor that they want to bring on board, as well as more to work out
details with the hospital administration. |
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Know the role of the vitreous humor to better understand certain ocular pathologies.
Nancy M. Holekamp, MD
http://www.retinalphysician.com/articleviewer.aspx?articleID=107028
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