Cross-post from the Reddit. Posting here as well because this situation needs to change sooner rather than later.
I know we all feel hopeless. I understand how crippling this situation is, as a moderate-severe case. The loss of one’s sexuality alone is absolutely devastating. There are no words to describe this experience.
That said, we NEED to push this year. We have a lot of momentum from the start of the Kiel study, and we need to keep going. Imagine: someday soon you may be able to feel the loving embrace of a partner, experience euphoria when listening to your favorite song, enjoy a sunny day. You could experience the joy that comes from getting off work and having the whole weekend ahead you. This is possible, but it is ultimately up to our ability to unite as a community. We are currently in a prisoner’s dilemma type of situation; yes, trying different supplements and protocols might get you marginal improvement (and there’s nothing wrong with looking for relief), but if we all unite, we have a real chance at getting back to 100%. For this to happen, we NEED all hands on deck.
That said, here are ways you can get involved:
Donate to PFS Network. Every penny helps. Ask your friends and family to donate. Forgo your Monday morning cup of coffee and donate to the Network instead. Consider starting a GoFundMe page. It’s unfortunate, but nobody is coming to save us. We have to have substantial sums of money to get things moving. Here is the link to donate: https://www.pfsnetwork.org/donate
Join our fundraising group. We have a group of 55+ people donating monthly. Our fundraising goal is currently 3K a month, and we have been hitting that target. If you’d like to join this group, please PM me. This is a really great initiative. Again, every penny helps; even if you can’t give substantial sums of money (I’m a college student myself), every contribution moves us closer to the cure.
Speak out publicly. You might have seen the videos from a couple patients this past week. They currently have a combined view count of 1.5K. We need more patients to speak out. I understand the desire for anonymity, but unfortunately staying quiet is not going to move our issue forward. We NEED to humanize this issue. 1500 men on a forum can be ignored, but real, genuine faces telling their story are a lot harder to ignore in this way. Even if it’s difficult, you have nothing to be ashamed of. Tell your story. If you’d like to speak on our YouTube channel, PM me. You can even share your story on Medium, as many have already done.
Make some (respectful and civil) noise. Report your symptoms to your respective regulatory body. Use social media to your advantage. Try respectfully writing to relevant researchers in your area (they won’t be able to fix anything right now, but we need to draw more scientific attention to this issue). Additionally, Rare Disease Day is coming up on 2/28. Share your story here: https://www.rarediseaseday.org/share-your-story/
Guys, we need to get everyone involved in 2023. Your life was stolen by a drug you were told was safe. We can get our lives back, but we need everyone to do their part. This issue has been occurring for a couple decades now. Thanks to the work of some incredible individuals, we have been able to get somewhere in recent years. However, we need everyone to unite, so we can support them and get things along faster. It’s time to get the boulder up the hill.
2023: The era of no excuses in the PFS community. Let’s do this.