Meet our next #WarriorOfTheWeek and hear how Lucia learned to adapt to having #VisualSnow while her fighter mentality encouraged her to never give up. 💪❤️

Spotlight on: Lucia Spaans ✨

“My name is Lucia, I’m 26 years old and I’m from the Netherlands. I was born with this super rare eye condition, that’s called ‘Morning Glory Syndrome’. It never really bothered me growing up, but suddenly during my early twenties, I got some complications that required me to be in and out of the hospital, and I had many (and I really mean mány) scans and doctors seeing me. This was also the time I started to notice that I was seeing a lot of sparks in my sight and floaters everywhere. On top of that, I developed severe tinnitus. This was a very difficult time for me, because I was always feeling sick. All of that resulted in anxiety, which is actually not uncommon for people who have Visual Snow. When my anxiety was the highest, I would have a panic attack 2 or 3 times every hour. When I would ask my eye doctors about the sparks I was seeing everywhere, the floaters, the tinnitus etc., they would all refer me to a psychologist. Thanks to Google, I had already ‘diagnosed myself’ with Visual Snow, so I knew it wasn’t a mental issue. About 3 years and many doctors later (I was not going to give up!), I was finally referred to a neurologist in Amsterdam who actually knew what Visual Snow was. He officially diagnosed me… such a relieve (even though I’m now officially diagnosed with 2 rare conditions, ha!). 

When my Visual Snow just started, I remember going to the beach, something I always loved to do, and being overwhelmed with sadness, thinking ‘I can’t ever look at the sea anymore and enjoy it, because the snow is everywhere’. This was more than 3 years ago, and I am enjoying the sea in summer as much as I can. For some reason, I simply learned to adapt to Visual Snow, and (with some help from my sunglasses) it doesn’t bother me anymore. My mentality has always been that of a fighter and I refuse to give up or not doing what I want in life, because of my health issues. I am currently a business owner and doing great! To my fellow Visual Snow people, I would like to tell you that it can get better and life can be great again. Hang in there!

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New Visual Snow Syndrome Study!

The VSI has been working with Dr. Tsang in California and Dr. Shidlofsky in Texas. Both doctors have been highly successful in reducing, and in some cases, eliminating symptoms of Visual Snow Syndrome in their patients. When we learned that their philosophies and methods were strikingly similar and effective, the VSI put them in contact with each other. They are now collaborating on an enhanced VSS protocol. They will be accepting new patients for this study.

Today, the VSI will be releasing a series of informational videos on our YouTube channel in which Dr. Tsang and Dr. Shidlofsky discuss their experience in treating VSS. The VSI will also post video testimonials from their patients. We are enthusiastic and optimistic to share Dr. Tsang’s and Dr. Shidlofsky’s insights with the VSS community. If you would like to make an appointment with either Dr. Tsang or Dr. Shidlofsky, their contact information will appear at the end of each video. Watch the videos here:

We recognize that the majority of people with VSS cannot travel to California or Texas to take part in this study. Therefore, once the study has concluded, Dr. Tsang and Dr. Shidlofsky have agreed to make a series of instructional videos that will show their step-by-step protocol, which can be done at home. They will offer suggestions and techniques that will allow the use of household items versus in-office medical equipment. The VSI will also make these videos available.

We would like to thank Dr. Tsang, Dr. Shidlofsky, Kelsey NaPier, and Michael Neustifter for their kind and generous contribution to the VSS community.

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