What is Visual Snow?

Visual Snow Syndrome

Let’s imagine you are watching your favorite cartoon on TV. Everything usually looks clear and colorful, right? But for some people, they see tiny little dots, kind of like static on a TV, all the time, even when they’re not watching TV or looking at a picture. These dots can be different in size and color. They can be white, black, or many colors like a rainbow.

You can also think of it like when you’re at the beach and you see lots of tiny grains of sand everywhere. For people with Visual Snow, it’s like those tiny grains are floating in front of their eyes all the time. It doesn’t hurt, but it can be a little annoying because it makes everything look a bit fuzzy or unclear.

Countries we help

Events for kids

Youngest case of onset

Average age of onset

93 8 13

About Visual Snow

Why is it called Visual Snow Syndrome?

“Visual Snow” is called that because it looks like tiny snowflakes falling in front of your eyes all the time, just like when you shake a snow globe and see all the little snowflakes swirling around inside. Imagine if you always saw these little snowflakes, whether you were inside, outside, sleeping or awake. The name helps everyone understand what it’s like to always see this kind of “snow”.

You may see other things with Visual Snow Syndrome

When you look up at the bright blue sky, you might see squiggly lines dancing around like little fairies or wiggly worms.

Sometimes, you might spot rainbow shapes floating around, like colorful blobs or zig-zag drifting through the air.

You might stare at something, and even when you look away, it's still there, just like a friendly ghost popping in to say hello!

In the dark, you might find it tricky to see, like trying to find your way in a shadowy forest.

You might see squiggly shapes that move when you try to look at them.

Sometimes, you might see bright lights or flashes, like tiny fireworks or comets.

You may feel other things with Visual Snow Syndrome

You might feel ringing or buzzing in your ears, like a choir of buzzing bugs singing a song just for you!

Sometimes, it might feel like your head is heavy, just as if you were carrying a busy city on your head.

You might feel like you’re not yourself.

And other times, you might feel tingles all over your body, like little bees tickling and dancing on your skin!

Sometimes, you might feel worried or sad, like when a superhero loses a battle against a tricky villain.

Who can help you?

Your Family

Your family, like your mom, dad, siblings, and the people who take care of you, really want to help and support you. But they need to know how you're feeling first! If you're not feeling well or something is bothering you, let them know. They care about you and want to make things better.

Your Teacher

Your teacher is there to help you learn and feel comfortable at school. Sometimes, they might not know that something is making it hard for you. When your teacher understands what's going on, they can help you more and make school a better place for you.

Other adults

There are times when you might need help, and you’re not with your family or at school. This could be when you're with friends, their family, at sports practice, or doing another activity. If you're not feeling well or need help, tell the adults around you. Explain what you can about how you’re feeling. You might need to tell them what you usually do when you feel unwell. Sometimes, your mom, dad, or carer might have already talked to them about this. If not, you can always tell the adult to contact your mom, dad, or carer for more information on how to help you.

The Right Doctor

If your vision looks different or you’re not feeling well, let your family know so they can find the right doctor who understands Visual Snow Syndrome. When you visit the doctor, you can bring your drawings, notes, or even describe what you see. This helps the doctor understand what’s happening and find the best way to help you. Think of doctors as health detectives! They ask questions, listen carefully, and put clues together to help you feel better. The more you share, the more they can help!

How do I tell my mom and dad?

Talking to your mom and dad about how you feel can seem a bit tricky and scary, but with love, understanding, and teamwork, you’ll figure it out together, because they want to help you.

Find the Right Time

Look for a cozy time, maybe during bedtime stories or dinner, when things are calm and relaxed.

Explain in Words or Pictures

Tell them that sometimes you see funny things, like tiny dots or squiggly lines in your vision. You can also show them pictures from our website or your own drawings.

Share Your Feelings

Let them know how seeing these things makes you feel. It might be confusing or a bit scary sometimes. Sharing how you feel can help them understand.

Ask for Their Help

Ask if they see them too or if they can take you to a doctor to help figure out what's going on. Teamwork makes the dream work!

Be Patient

It might take a little while for them to understand everything. Just be patient, and they'll do their best to help you.

Stay Positive

Remember, having Visual Snow Syndrome doesn't change how awesome or talented you are! There are lots of ways to handle it, and your family and the Visual Snow Initiative (VSI) will be there to support you every step of the way.

Example of How To Say It

Hi Mom/Dad! Can I talk to you about something? Is it okay if I tell you right now?

Description of Feelings

Sometimes, I see funny things with my eyes, like tiny dots or squiggly lines.

Pictures

I found a picture online that helps show what I see. I also drew what I see every day.

Ask for Support and Research

I know it might take some time for us to understand everything, but thanks for listening to me and for your support. Here’s the website where I found some pictures that help explain what I feel.

How It Makes You Feel

Seeing these things can be a bit confusing or scary for me sometimes. I want to tell you how I feel so you can understand what I’m going through

Ask for Help

I was wondering if maybe you see it too, and maybe it might be a good idea to visit a doctor together. They can help us learn more about Visual Snow and what we can do to make it easier.

Triggers

Sometimes what you feel just happens and we don’t know why yet. But sometimes something makes it feel worse. Just like how sitting in the sun for a long time can make us sunburnt.

Imagine you have a backpack…

You start by putting in some crayons. Then a toy car. Then a teddy bear. Then a book. Then a snack. The backpack is full! If you try to put more things in, they will fall out.

That’s just like a person with Visual Snow Syndrome.

if you fill your backpack with things that make Visual Snow worse, like being tired, worried, or looking at bright screens, it overflows.

When your backpack overflows, you see more squiggly lines and dots.

But if you play happily and stay calm, your backpack won’t overflow.

What can you do to help?

You can keep a special kind of diary. You can write or draw what you do and how you feel every day. You can get a grown-up to help you. Your diary will be very helpful for your doctor.

Each day try to answer these questions:

What did I eat and drink today?
What time did I go to bed and wake up?
Did I feel worried?
Did I play any sports or games today?
What was the weather like?
Did I watch TV or play video games today?
Were the dots tiny, little, or big?
Did the dots move slowly or very fast?
Was I sleepy?
Was I dizzy?
Did I see spots, wiggles, rainbows, or lights?
Did I feel different?
What bothered me the most today?
What made me feel better today?

Remember keeping notes on these questions helps your parents understand you and gives your doctor useful information to better manage VSS!

Remember your backpack from earlier?

One way to make you feel better is by stopping your backpack from getting full. So, if you wake up super early and feel really tired, the bright lights bother you, and you’re feeling worried today, your backpack is almost full. Your mission is to try not to add more stuff to your backpack. You could take a nap or wear your sunglasses to help.

Take your time