Greater awareness of Visual Snow Syndrome (VSS) among physicians and patients is essential. This will lead to more knowledge and more research which is better for understanding this neurological condition and for finding a cure.
Here we have outlined what you can do to create more awareness:
- Educate your doctor/family/friends about VSS
You can do this with the help of:
- Visual materials (link: visualsimulations.com)
- Scientific articles, from PubMed for instance, to bring along to your doctor in which you highlight the most important sentences. Of course, doctors don’t always have enough time to read through the entire article, hence the highlighted sentences.
- Join forces with other VSS patients and tell your story
Who knows, maybe your story can serve as someone else’s survival guide and the more stories about VSS patients the better for awareness.
- Join VSS communities
To exchange info and tips on how to deal with VSS.
- Accurate info about VSS is key
When you come across incorrect info about VSS on social media you can inform them politely (with a reliable source of course) and ask them to correct it. This is also part of our mission. Unfortunately, we still come across too much false info on VSS.
- Spread the word about VSS via multiple resources
You can do this via certain organisations, for example: neurology organisations, rare disorders organisations or invisible illness organisations.