Since developing this horrific disease just over a year ago I have been thinking about what is holding this community back. I’ve looked at rare disease communities who have successfully raised significant funding and managed to gain the publicity necessary to put their issue on the map.
It’s clear to me that the only way this issue is going to be taken seriously is if more people step forward and talk about what has happened. The PSSD community are now receiving over half a million views on TikTok for their personal story videos, and are consistently posting “faces of PSSD” on reddit. I think it is extremely important for more of us to step forward and be willing to talk about what has happened to us. The outside world is never going to care about a bunch of anonymous accounts on a forum. No one can go public on your behalf, it’s only something you can do. I value my privacy as well, but I don’t value it over my health. People will take this seriously if you stare them in the face with your eyes and tell them what has happened to you. If you won’t do that, people won’t take it seriously and there won’t be progress. Sometimes, things are black and white.
The other issue holding us back is the constant pseudo scientific theorising. There are people who likely didn’t even study chemistry or biology in the final years of secondary school who are constantly opining with ridiculous theories about what could be responsible for this disease. I’m not saying we should be close minded, but it looks ridiculous to the outside world and feeds the narrative that this disease isn’t real when you have people spending years on end talking incessantly about hormones and supplement protocols.
Watch this TedTalk from the Visual Snow Initiative. No one in that community is running around claiming HCG can fix visual snow or any other nonsense. They have accepted that their condition isn’t curable yet, and they are working on figuring out what the mechanism is. We need to adopt this attitude and market ourselves properly to the outside world. Otherwise we will remain in the PFS ghetto.
In short, we need more people coming forward, we need more funding from inside and outside the community, we need more people to tap into their personal networks, and we need more outreach going on. It’s really time that people start doing the right thing.
There is a PFSN webinar happening this saturday. Mitch is hosting it twice for your benefit. Don’t be like one of the thousands of patients who can’t be bothered to show up to learn about the important action taking place to ultimately fix this condition. Your life with this disease is so exciting and full that you can’t spare one hour every 3 months to stay engaged with the developments in the community? This attitude needs to change immediately.
You can register here: https://www.pfsnetwork.org/webinars
If someone messages me and says they are willing to go public with a short TikTok video, I would be happy to join them in also going public and to help with editing. If someone is serious about reaching out to journalists, philanthropists, and organisations I would be happy to work together. If someone has questions or reservations about going public, talk to me. I have told friends, family, coworkers, and investors about every aspect of this disease. Who cares? It’s not my fault I’m in this. Time to swallow our pride and work towards a better future without this disease.
