Help Cure Visual Snow

$103,437 of $570,000 goal

Raised by 1,125 people in 45 months
Jen Ambrose
for Eye on Vision Foundation Corp
 ORLANDO, FL
Do you want to make a real difference in the lives of people who are suffering from a rare neurological disorder?

We NEED your help.

The Eye on Vision Foundation 501(c)3 is the ONLY charity in the world raising money for much needed research into visual snow syndrome.

What does this mean? Why is it important?

If we cannot raise this money the research cannot continue and those of us suffering day in and day out will have no hope for a treatment or a cure.

If there was ever a way for you to make a positive impact on a persons life, this is it. Your donation will not get lost in paperwork and accounting, it goes straight to the research.


Visual Snow - What is it?

Visual snow syndrome is an untreatable neurological disease that devastatingly affects a persons vision, hearing, thinking, and physical body. Many of the symptoms a patient experiences are constant and do not come and go. Symptoms vary from patient to patient, but all patients with visual snow syndrome see static (similar to bad TV reception) everywhere they look.


My Story

My visual snow story started around the age of 6. I was young, so I'm not exactly sure if I was 5 or 6, but I clearly remember going to my mom in first grade and asking her what the flying dots I was seeing in the dark were. She thought I was talking about floaters, told me it was normal, and that was the end of that. Two years later my teacher contacted my mom telling her that I was having trouble seeing in school. My mom took me to the eye doctor and we learned that I was legally blind. Fortunately I was able to be corrected with glasses, but the doctor seemed baffled how this could have gone missed. Looking back now I wonder if the start of my visual snow two years prior had something to do with it.

In 2005 my visual snow progressed to the full blown syndrome. I was experiencing worsening visual acuity, floaters, after images, loss of contrast sensitivity, ghosting, glare, halos, starbursts, tingling and numbness in my body. I was hospitalized and had every test run that was available and no doctor anywhere could figure out what was wrong with me. I was sent home time and time again from tests with doctors confused and questioning what was wrong with me. After many months of research on my own I came to realize that I had a little known condition called visual snow. Sadly, there was no research being done for the condition, so I started a non-profit and went on a quest to find a cure. In 2011, I was contacted by a visual snow patient whose neurologist was interested in researching visual snow. The research began in 2012. In 2014, my visual snow syndrome progressed again with worsening symptoms and new symptoms of tinnitus, head and ear pressure, trails, night blindness, along with another regression of my visual acuity (the eye chart test) and the development of more floaters. Then I underwent another worsening in 2016.

There is not enough known about visual snow, so we do not know how much is reversible and treatable and how much is permanent damage. The changes that some patients have experienced to the eye itself are permanent (visual acuity loss and floaters). The changes to the brain are hopefully reversible. Time is crucial to this research.

Myself, and many others like me, are counting on you to donate to the cause or share this story so that we can live our lives like we want to. Simple pleasures like going to the beach, reading a book, going for a Sunday drive or watching the sunset are too visually taxing for many sufferers.


Our Children

Because so little is known about visual snow there is no official documentation on whether this is a genetic condition or not. Nothing official, but sadly we have conducted our own surveys, and yes, the responses are too overwhelming to ignore. There is a genetic link to visual snow. Many of us living with the condition, who are parents already, are terrified that we have passed this along to our children. Then there are those who haven't had children yet who are too scared to in fear of passing along the condition. More and more parents, and even the children themselves, are joining the support group for visual snow on a weekly, sometimes daily basis. We see young kids coming scared, looking for answers, and treatment, that can't be offered to them.

Primary Symptoms of Visual Snow

Changes in vision include:

seeing television-like static across the entire visual field 24 hours a day, 7 days a week - even with your eyes closed (visual snow)

seeing millions of silver specks flashing and moving everywhere in the sky and bright surfaces (entopic phenomenon)

looking at your hand, and then looking away and still seeing your hand for several seconds even though you are no longer looking at it (after images)

seeing the vitreous inside your eye breaking down with gray, black and clear cobwebs, clouds, spots and strands (floaters)

colors fade away (low contrast sensitivity)

looking at a sentence and seeing the same words you are reading floating on top of the text you are looking at (ghosting)

seeing a moving object's motion after it passes your eyes (trails)

Other visual symptoms include: night blindness, light sensitivity, flashes of light, glare, halos, starbursts, dry eyes, blind spots, vision blacks out with one eye closed, yellow-tinted vision, double vision and loss of accommodation.

Changes in hearing include: constant ear pressure (this would be the feeling of needing to pop your ears on an airplane) and ringing of the ears (tinnitus)

Changes in thinking and the brain: migraines,a feeling of watching oneself act, while having no control over a situation (depersonalization), a sensation that the world seems unreal (derealization)

Changes in the body: numbness, tingling, twitching, vertigo and dizziness


Hope

Four years ago, eyeonvision.org, collaborated with two neurologists (Dr. Schankin and Dr. Goadsby) who became committed to finding a treatment to visual snow. They set up the first visual snow study ever. The results of the study were released in May 2014 and the doctors believe they have found the area of the brain where visual snow is coming from. Visual Snow Study

In 2015-2016 Eye on Vision Foundation funded a German study into Visual Snow led by Dr. Schankin. The results of this study should be released at the end of 2016. 

Prof Goadsby is now putting together a new phase of research to take place at King's College London, England. It is our hope that this imaging study will begin in late 2016 if funding can be secured by EOVF through generous donors like yourselves. 


Our Goal

We are reaching out to supportive people like you to help us raise $570,000 through GoFundMe in time to support the next phase of research into visual snow. All funds donated will go towards the research efforts to find a treatment for the many who are suffering with this condition every moment of their lives.

Since July 2014 we have raised over $80,000 through GoFundMe and we continue to work day in and day out to raise funds through grassroots efforts. Every dollar that we receive makes a difference. Every single dollar counts!

Please note that $50,000 of the GoFundMe dollars raised that you see in our totals were used to pay for the study in Germany. 

We cannot afford to give up because no one else in the world is raising money for visual snow research. No one - anywhere. You and I are it. Please become part of this movement to find a treatment or better yet a cure.


Please Act Today

What would you do if you or a loved one were diagnosed with an untreatable condition?

Then you learned that the only research in the world being done for it was out of funds...

I hope that you would do everything in your power to raise those funds, to fight for yourself or your loved one.

There is no government support for this, no grants, no celebrity spokesperson, no viral YouTube video - it is just you and me.

Every dollars counts more than you know, but even if all you can do is forward this link to as many people you know, or share this campaign on Facebook, you will be making a huge difference.

Help Cure Visual Snow (GoFundMe) was created as part of our own non-profit 501c3 Eye on Vision Foundation (Tax ID: 20-5394501) There are no paid employees or personal medical expenses taken from the foundation. All donations made here are tax-deductible.

Other donation options: http://eyeonvision.org/donate

Help us please.


Thank you,
Jen Ambrose
Founder and President of The Eye On Vision Foundation
"LIKE" us on Facebook EyeOnVision
EyeOnVision.org
http://www.gofundme.com/visual-snow


+ Read More
The Visual Snow diary study is still looking for more patients to participate. This study can be done from home, and is non-invasive.


If you have visual snow syndrome, please send the information below to
vs-research@kcl.ac.uk,
and you will receive an email back with information regarding the study!


Please provide the following information within your email:

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) Date or age when your symptoms started.


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

6) Have you ever been diagnosed with migraine or have you had a headache of moderate or severe intensity in the past? ( Please answer yes or no)


7) Have you ever taken any illicit drugs in the past?





Here is the email once more for you: vs-research@kcl.ac.uk

Thank you,
Jen Ambrose
Founder and President of The Eye On Vision Foundation
"LIKE" us on Facebook https://www.facebook.com/EyeOnVision
http://www.EyeOnVision.org
EyeOnVision@gmail.com
http://www.gofundme.com/visual-snow
https://www.gofundme.com/floaters
+ Read More
Still looking for more participants for the Visual Snow study. There are two parts to this study.

1) Imaging in London, England (UK patients being accepted first)
2) Diary of symptoms study (open to all no matter where you live)

No matter which study you would like to participate in, you must fill out the below questionnaire and email back to the researchers.


If you have visual snow syndrome, please send the information below to
vs-research@kcl.ac.uk,
and you will receive an email back with information regarding the study!

Please provide the following information within your email:

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) Date or age when your symptoms started.


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

6) Have you ever been diagnosed with migraine or have you had a headache of moderate or severe intensity in the past? ( Please answer yes or no)


7) Have you ever taken any illicit drugs in the past?





Here is the email once more for you: vs-research@kcl.ac.uk

Thank you,
Jen Ambrose
Founder and President of The Eye On Vision Foundation
+ Read More
Hello Visual Snow and Eye on Vision Supporters,

Patients are actively being recruited for the imaging study and three subjects have completed it to date.

The questionnaire study has received several responses back, but not nearly the amount of responses back that we need. Please, when you receive the request to complete the diary, please complete and send back via the instructions. The first questionnaire that you send back is only part one. When the doctors write you back, they will need you to complete part two and send that back as well. I will include part one here again for those who have not completed this yet.

f you have visual snow syndrome, please send the information below to vs-research@kcl.ac.uk, and you will receive an email back with information regarding the study!

Please provide the following information within your email:

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) Date or age when your symptoms started.


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

6) Have you ever been diagnosed with migraine or have you had a headache of moderate or severe intensity in the past? ( Please answer yes or no)


7) Have you ever taken any illicit drugs in the past?





Here is the email once more for you: vs-research@kcl.ac.uk
+ Read More
Hello!

Many of our donors have asked for a little more explanation of what the German visual snow study was looking for, which we helped to fund in 2014. I recently wrote to Dr. Schankin and this was his reply:

With that study, we investigated the processing of basic visual information in the brain of patients with visual snow. The aim was to see if we can find objective electrophysiologic data for the condition that might serve as measures for future treatment studies. This is important since - in contrast to radioactive brain imaging that we did before – these tests can be repeated.

The results of this study need to be reviewed during the meeting and by colleagues before any clinical application can be designed.

It is Dr. Schankin's hope that colleagues will be able to look at the data this coming September.

While every part of Visual Snow research is crucial to better understand this condition, we are still in the very early phases of research. More financial support is needed in order to continue through the necessary phases of medical research. Please consider supporting us today. We still need almost $50,000 more to ensure that Dr. Puledda's salary is covered for another year. Without this money the research will have no funding to continue.


Thank you,
Jen Ambrose
Founder and President of The Eye On Vision Foundation
"LIKE" us on Facebook https://www.facebook.com/EyeOnVision
http://www.EyeOnVision.org
+ Read More
Read a Previous Update
Jade Prior
32 months ago

Anna, please remember that there are very varying degrees of Visual Snow, some people find it completely life changing, particularly those who were not born with it. Since onset I have had a migraine headache every day of my life and my vision has been severely affected. This has changed the path of my life drastically and caused depression and anxiety to worsen tenfold. Please spare a thought for those with VS who have not been as fortunate as you.

+ Read More
Chase Stephens
19 months ago
5
5

Its fortunate that there are lucky people like Anna but that is not the case for everyone. The non visual symptoms are for many the worst part. Sufferers have varrying degrees of both visual and mental symptoms. I had to drop out of an honners physics program despite a 4.0. My depersonalization and brain fog are so intense that I can no longer comprehend what I used to. When symtoms flare up it takes me a while to process even a simple sentence. The constant static and ringing on top of that make me feel that ive gone mad. I would die if it meant having 10 minutes to feel and see the way I used to. Just to sit atop a beautiful mountain one last time and feel the sense of beauty and wonder I used to feel as a teenager. For many, this is definitely a debilitating disorder.

+ Read More
Ron Fuller
23 months ago
4
4

I met with my doctor this morning and one item was my large floater. I told him and showed him that I was testing a magnetic field pulling the floater to one side of the eye. It's not original, others have tried a magnetic on one side of the eye. I'm getting about a 20 to 30 percent improvement over 8 weeks of testing. He is going to provide a serious case of floaters (patient) for me to test along with me at no charge. It's a very inexpensive solution. The only thing I've done new was to increase the magnetic field with much higher energy magnets. ( very small). This ends up on the glasses and invisible with dark glasses. I told him, I want the worse case he has.

+ Read More
Julia Raymer
24 months ago
4
4

I got visual snow over a year ago. Mine was caused by Chronic Inflammatory Response Syndrome (otherwise known as Biotoxin Illness). It has gone down considerably with treatment although I still have floaters and tinnitus. It's diagnosable with bloods tests which my insurance covered. My body is in a constant state of inflammation because of exposure to either lyme or mold or both. It is genetic in that I have a gene that doesn't allow me to detox properly from the biotoxins that mold or lyme produce. I have to detox the biotoxins in order to get better. I'm just starting the Shoemaker protocol which should help alot as well as getting my house tested for mold and I'm wrapping up my treatment of lyme disease. It took awhile to figure this out as there are only a handful of doctors who treat CIRS.

+ Read More
Anna Yedrikova
34 months ago
4
4

I've had visual snow my entire life... and from what I've experienced, it's hardly a 'devastating' disorder. For most of my life I thought that was how everyone saw. The vast majority of the time, I don't even notice that I have it.

+ Read More
Anna James
10 months ago
2
2

My daughter (5 years old) has visual snow. The first night it occurred, she woke crying and kept looking all around at her arms saying that bugs were jumping all over and to get them off. She was terrified and it was scary and heartbreaking as a mom watching her react to things that I couldn't see. She has had visual snow ever since and that was almost 2 years ago. She calls them tumbleweeds and talks about them openly. They are the most prominent in the dark, but she also sees them in the light. She has photosensitivity and experiences headaches fairly often. She also complains often about her body "fizzing" and tingling. As far as genetics, I am not aware of anyone else in our family that suffers from visual snow. As a mom, I read often about this syndrome and pray for answers and a cure or anything that will help the symptoms. Love to all who experience this syndrome, my heart is with you. May God bless this research to unfold new answers.

+ Read More
LyrikalMaster AtomicalCreation
26 months ago
2
2

Together as one!

+ Read More
Paul Winter
40 months ago
2
2

Hi I would like to no duse your charity have a bace in the UK as I would like to try help ad I have found out in past 5 days what visual snow is seems I have had this all my life I found out in past cople years I also have dyslexia and irlens syndrome and just attributed all my symptoms to that seem that I was in error so if I can help in the UK please let me no I would like to try help raise awareness in the UK to try help the people that don't no like I didt

+ Read More
Heidi Burchinal
42 months ago
2
2

I have had VS my entire life, and no one ever believed me. Ever since I was a little girl I complained about it. I even told my doctors, but my parents and my doctor just assured each other that as a child I had a creative imagination. Now for 21 years I have lived with it, and it is only slightly worse. I wish I could make a donation to put in, but at the moment I am unable. Hopefully in the future I can help make a difference. But for now I hope this doesn't get worse, and I pray for you and what you are going through! Stay strong. I know there are people out there who will make this happen!

+ Read More
Sarah Barbuti
7 months ago
1
1

I went 22 years without this issue and randomly all of a sudden it developed and got progressively worse. Some days I can't read without having the object up to my face where people suggest glasses but the optanologist just asks me if I have been checked for MS. I have to stand two feet away from my flat screen TV because I can't read the TV guide. I could go on but why would I. I'd love to pretend everyone is so lucky it doesn't interfere with their everyday life but I'm lucky enough when I wake up it isn't as bad and sometimes lessens at random times during the day. A cure would be great because it does interfere with my everyday life considering I'm a medical professional.

+ Read More
Erin Lindsey
7 months ago
1
1

I also suffer from visual snow and tinnitus. Mine was brought on by a course of antibiotics + steroids. As you said, most docs haven't even heard of it. If enough of us band together, maybe research will seek a cure. If you hear anything, please let me know.

+ Read More
李冬雨
9 months ago
1
1

I am a Chinese student with Visual Snow,What do you know about the latest research?

+ Read More
Rebecca Prieve
10 months ago
1
1

Both me and my son have it and the eye doctors never even heard of it. I don't think it is that rare I think no one understands what it is. I complained for years doctors just act like your crazy so you don't bring it up anymore.

+ Read More
Tracy Lemos
12 months ago
1
1

I actually find it infuriating to read comments like Anna's. You would think that one could actually receive unmitigated support on a Visual Snow research page, of all places. It is not only ignorant but narcissistic to assume that one's own experience with a disorder is equivalent to everyone else's, analogous to a cancer patient who became cancer-free after one surgery scoffing at and questioning those whose cancer almost takes their life. Anna, you may wish to read a bit more about the varying forms and severity of VS syndrome--after all, it is a syndrome, which indicates there is variation--before making pronouncements.

+ Read More
Meredith Adams-Krouse
20 months ago
1
1

Wish I could donate all the money I wasted at doctors, neurologists and specialists who all say there is nothing they can do. So pissed!

+ Read More
Marion Jainchill
26 months ago
1
1

I thought I was going insane until I discovered VS. I can't tell if it's worsened significantly the past few months or if I'm just now noticing how truly bad it is. I also am nearsighted, so my vision is horrible. I wear glasses but I need new ones. I usually see dark static with colors occurring as well. I see floaters, ghosting, afterimages, halos, starbursts, etc., which are worse when I'm wearing my glasses (as I said before, I truly need new ones, but I can't afford it at the moment). I also struggle with anxiety and derealization/depersonalization. My anxiety makes me overthink this and I am struggling. It's like torture to have endure this everyday. I really hope they find a cure, or at least some sort of medicine we can take to make the symptoms less intense.

+ Read More
David Anthony
42 months ago
1
1

Hi I want to donate, but I don't have a creditcard. I'm having visual snow symptoms for 4 years. Floaters, after images, silvers specks flashing and so on. I'm a cameraman so this really effects my work! Is there another way to donate?

+ Read More
Andrew Hawkins
5 months ago

I've had VS as far as I can remember--since at least before the age of 3. Mostly, I ignore it. It can be a bit of a trip sometimes at night when exposed to brief, bright light when well adjusted to the dark. The tinnitus is probably the more annoying aspect as I cannot wear noise-canceling headphones without being in pain.

+ Read More
Samuel Laird
6 months ago

I've had visual snow following drug usage in my early twenties and it was barely noticeable until about a month ago when it suddenly got worse. I can see the static on many surfaces, even during the day time. I also can see after images, eye floaters, starbursts, ect. I cannot decide which symptom is worse; they all bug me to no end. I hope the cure is close by, or at least an effective treatment. We are not alone in this.

+ Read More
Erin Lindsey
7 months ago

I suffer visual snow. Mine was brought on by a very severe reaction to antibiotics and steroids (my reaction is called FQAD if you wanted to look it up). By any chance did you take antibiotics/steroids for, say, a chest infection prior to your onset? I'm sure that's not the only means by which snow develops, I just know it was the inciting incident for mine. Prior to my severe reaction, I was an investigative journalist. I've used this training to investigate the root causes of this illness (at least in my case). For me, the antibiotic poisoning resulted in CNS damage including damage to the visual cortex and the GABA receptors in my brain. The result was visual snow, tinnitus, and intractable insomnia. I receive some respite from my visual snow and tinnitus symptoms when I use klonopin, a GABA A agonist in the benzodiazepine class. It does not eliminate the symptoms, but it does mute them for a time. Like yourself, I'm desperate for relief from the snow, which is severe. I've seen numerous eye specialists but the only doctor to believe me about the visual snow is my neurologist. My hope lies in research, perhaps in stem cells which will help recover those areas of my brain that were damaged due to FQAD. If you find a doctor that helps and believes you, please let me know. The neurologist who believes me is Audrey Nuccio in Atlanta. Unfortunately the medications we have tried for the snow have not helped, aside from the klonopin, which I try to use sparingly so as not to build up a tolerance. Please do reach out to me so we can investigate this together.

+ Read More

$103,437 of $570,000 goal

Raised by 1,125 people in 45 months
Created July 15, 2014
Funds raised will benefit:
Eye on Vision Foundation Corp
  Certified Charity
+ Learn More
Orlando, FL
EIN: 205394501
How it Works
  1. You make a donation using a PayPal account or a credit/debit card to PayPal Giving Fund (a 501(c)(3) charitable organization).
  2. After the deduction of GoFundMe platform and payment processing fees, PayPal Giving Fund delivers the funds it receives to the chosen charity on a monthly basis.*
* If, after reasonable efforts, PayPal Giving Fund cannot deliver donations to this charity, the funds may be donated to another charity per PayPal Giving Fund’s policies.
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$30
Anonymous
3 days ago
$25
Anonymous
12 days ago
NB
$5
Niklas B
18 days ago

Just as a quick reminder: The Visual Snow Conference will be held on Saturday, May 5th, 2018 at the University of California San Francisco (UCSF)

$20
Anonymous
21 days ago
Jade Prior
32 months ago

Anna, please remember that there are very varying degrees of Visual Snow, some people find it completely life changing, particularly those who were not born with it. Since onset I have had a migraine headache every day of my life and my vision has been severely affected. This has changed the path of my life drastically and caused depression and anxiety to worsen tenfold. Please spare a thought for those with VS who have not been as fortunate as you.

+ Read More
Chase Stephens
19 months ago
5
5

Its fortunate that there are lucky people like Anna but that is not the case for everyone. The non visual symptoms are for many the worst part. Sufferers have varrying degrees of both visual and mental symptoms. I had to drop out of an honners physics program despite a 4.0. My depersonalization and brain fog are so intense that I can no longer comprehend what I used to. When symtoms flare up it takes me a while to process even a simple sentence. The constant static and ringing on top of that make me feel that ive gone mad. I would die if it meant having 10 minutes to feel and see the way I used to. Just to sit atop a beautiful mountain one last time and feel the sense of beauty and wonder I used to feel as a teenager. For many, this is definitely a debilitating disorder.

+ Read More
Ron Fuller
23 months ago
4
4

I met with my doctor this morning and one item was my large floater. I told him and showed him that I was testing a magnetic field pulling the floater to one side of the eye. It's not original, others have tried a magnetic on one side of the eye. I'm getting about a 20 to 30 percent improvement over 8 weeks of testing. He is going to provide a serious case of floaters (patient) for me to test along with me at no charge. It's a very inexpensive solution. The only thing I've done new was to increase the magnetic field with much higher energy magnets. ( very small). This ends up on the glasses and invisible with dark glasses. I told him, I want the worse case he has.

+ Read More
Julia Raymer
24 months ago
4
4

I got visual snow over a year ago. Mine was caused by Chronic Inflammatory Response Syndrome (otherwise known as Biotoxin Illness). It has gone down considerably with treatment although I still have floaters and tinnitus. It's diagnosable with bloods tests which my insurance covered. My body is in a constant state of inflammation because of exposure to either lyme or mold or both. It is genetic in that I have a gene that doesn't allow me to detox properly from the biotoxins that mold or lyme produce. I have to detox the biotoxins in order to get better. I'm just starting the Shoemaker protocol which should help alot as well as getting my house tested for mold and I'm wrapping up my treatment of lyme disease. It took awhile to figure this out as there are only a handful of doctors who treat CIRS.

+ Read More
Anna Yedrikova
34 months ago
4
4

I've had visual snow my entire life... and from what I've experienced, it's hardly a 'devastating' disorder. For most of my life I thought that was how everyone saw. The vast majority of the time, I don't even notice that I have it.

+ Read More
Anna James
10 months ago
2
2

My daughter (5 years old) has visual snow. The first night it occurred, she woke crying and kept looking all around at her arms saying that bugs were jumping all over and to get them off. She was terrified and it was scary and heartbreaking as a mom watching her react to things that I couldn't see. She has had visual snow ever since and that was almost 2 years ago. She calls them tumbleweeds and talks about them openly. They are the most prominent in the dark, but she also sees them in the light. She has photosensitivity and experiences headaches fairly often. She also complains often about her body "fizzing" and tingling. As far as genetics, I am not aware of anyone else in our family that suffers from visual snow. As a mom, I read often about this syndrome and pray for answers and a cure or anything that will help the symptoms. Love to all who experience this syndrome, my heart is with you. May God bless this research to unfold new answers.

+ Read More
LyrikalMaster AtomicalCreation
26 months ago
2
2

Together as one!

+ Read More
Paul Winter
40 months ago
2
2

Hi I would like to no duse your charity have a bace in the UK as I would like to try help ad I have found out in past 5 days what visual snow is seems I have had this all my life I found out in past cople years I also have dyslexia and irlens syndrome and just attributed all my symptoms to that seem that I was in error so if I can help in the UK please let me no I would like to try help raise awareness in the UK to try help the people that don't no like I didt

+ Read More
Heidi Burchinal
42 months ago
2
2

I have had VS my entire life, and no one ever believed me. Ever since I was a little girl I complained about it. I even told my doctors, but my parents and my doctor just assured each other that as a child I had a creative imagination. Now for 21 years I have lived with it, and it is only slightly worse. I wish I could make a donation to put in, but at the moment I am unable. Hopefully in the future I can help make a difference. But for now I hope this doesn't get worse, and I pray for you and what you are going through! Stay strong. I know there are people out there who will make this happen!

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Sarah Barbuti
7 months ago
1
1

I went 22 years without this issue and randomly all of a sudden it developed and got progressively worse. Some days I can't read without having the object up to my face where people suggest glasses but the optanologist just asks me if I have been checked for MS. I have to stand two feet away from my flat screen TV because I can't read the TV guide. I could go on but why would I. I'd love to pretend everyone is so lucky it doesn't interfere with their everyday life but I'm lucky enough when I wake up it isn't as bad and sometimes lessens at random times during the day. A cure would be great because it does interfere with my everyday life considering I'm a medical professional.

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Erin Lindsey
7 months ago
1
1

I also suffer from visual snow and tinnitus. Mine was brought on by a course of antibiotics + steroids. As you said, most docs haven't even heard of it. If enough of us band together, maybe research will seek a cure. If you hear anything, please let me know.

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李冬雨
9 months ago
1
1

I am a Chinese student with Visual Snow,What do you know about the latest research?

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Rebecca Prieve
10 months ago
1
1

Both me and my son have it and the eye doctors never even heard of it. I don't think it is that rare I think no one understands what it is. I complained for years doctors just act like your crazy so you don't bring it up anymore.

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Tracy Lemos
12 months ago
1
1

I actually find it infuriating to read comments like Anna's. You would think that one could actually receive unmitigated support on a Visual Snow research page, of all places. It is not only ignorant but narcissistic to assume that one's own experience with a disorder is equivalent to everyone else's, analogous to a cancer patient who became cancer-free after one surgery scoffing at and questioning those whose cancer almost takes their life. Anna, you may wish to read a bit more about the varying forms and severity of VS syndrome--after all, it is a syndrome, which indicates there is variation--before making pronouncements.

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Meredith Adams-Krouse
20 months ago
1
1

Wish I could donate all the money I wasted at doctors, neurologists and specialists who all say there is nothing they can do. So pissed!

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Marion Jainchill
26 months ago
1
1

I thought I was going insane until I discovered VS. I can't tell if it's worsened significantly the past few months or if I'm just now noticing how truly bad it is. I also am nearsighted, so my vision is horrible. I wear glasses but I need new ones. I usually see dark static with colors occurring as well. I see floaters, ghosting, afterimages, halos, starbursts, etc., which are worse when I'm wearing my glasses (as I said before, I truly need new ones, but I can't afford it at the moment). I also struggle with anxiety and derealization/depersonalization. My anxiety makes me overthink this and I am struggling. It's like torture to have endure this everyday. I really hope they find a cure, or at least some sort of medicine we can take to make the symptoms less intense.

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David Anthony
42 months ago
1
1

Hi I want to donate, but I don't have a creditcard. I'm having visual snow symptoms for 4 years. Floaters, after images, silvers specks flashing and so on. I'm a cameraman so this really effects my work! Is there another way to donate?

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Andrew Hawkins
5 months ago

I've had VS as far as I can remember--since at least before the age of 3. Mostly, I ignore it. It can be a bit of a trip sometimes at night when exposed to brief, bright light when well adjusted to the dark. The tinnitus is probably the more annoying aspect as I cannot wear noise-canceling headphones without being in pain.

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Samuel Laird
6 months ago

I've had visual snow following drug usage in my early twenties and it was barely noticeable until about a month ago when it suddenly got worse. I can see the static on many surfaces, even during the day time. I also can see after images, eye floaters, starbursts, ect. I cannot decide which symptom is worse; they all bug me to no end. I hope the cure is close by, or at least an effective treatment. We are not alone in this.

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Erin Lindsey
7 months ago

I suffer visual snow. Mine was brought on by a very severe reaction to antibiotics and steroids (my reaction is called FQAD if you wanted to look it up). By any chance did you take antibiotics/steroids for, say, a chest infection prior to your onset? I'm sure that's not the only means by which snow develops, I just know it was the inciting incident for mine. Prior to my severe reaction, I was an investigative journalist. I've used this training to investigate the root causes of this illness (at least in my case). For me, the antibiotic poisoning resulted in CNS damage including damage to the visual cortex and the GABA receptors in my brain. The result was visual snow, tinnitus, and intractable insomnia. I receive some respite from my visual snow and tinnitus symptoms when I use klonopin, a GABA A agonist in the benzodiazepine class. It does not eliminate the symptoms, but it does mute them for a time. Like yourself, I'm desperate for relief from the snow, which is severe. I've seen numerous eye specialists but the only doctor to believe me about the visual snow is my neurologist. My hope lies in research, perhaps in stem cells which will help recover those areas of my brain that were damaged due to FQAD. If you find a doctor that helps and believes you, please let me know. The neurologist who believes me is Audrey Nuccio in Atlanta. Unfortunately the medications we have tried for the snow have not helped, aside from the klonopin, which I try to use sparingly so as not to build up a tolerance. Please do reach out to me so we can investigate this together.

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