The momentum we have generated in just 9 days is an undeniable mandate for change.

With 733 signatures, over €180 raised, and 8,474 views, our message is clear. We can’t keep living like this. Despite what we’re often told, that this condition is supposedly rare, the reality shows something very different. Far more people are affected than doctors and statistics suggest, which is clearly visible in the thousands active in support groups as well as in how many people signed this petition in just 9 days. This level of support is incredible. It proves that we are no longer willing to suffer in silence.

We are tired of being told that "at least there’s something." Let’s be clear: FL-41 glasses, NORT, mindfulness, or off-label drugs like Lamotrigine are not cures. They are placeholders. They are "options" given to us just so the medical community can say they tried. For the vast majority of us, they simply do not work. They do not stop the static or erase the intrusive after-images. They do not bring back our lives.

We don't want "management." We want real change. We want treatments, real ones. 

But let's be honest: 733 signatures is just the beginning. To make the WHO and NIH truly act, we need thousands more. We cannot stop now. We are still at the very start of this fight, and the numbers must keep climbing.

The fact that our struggle is invisible to the naked eye does not mean it isn't real. It doesn't mean we aren't suffering in a sensory prison every single second of our lives. We are finally breaking the silence. We will not be ignored anymore.

We are a community calling for science, seeking clinical trials, and deserving a future.

Please, keep signing and sharing. Every single signature is a message that we won't be ignored anymore.