Dear fellow PFS patients,
As providers of the largest and longest-established patient platform, we are shouldering an unsustainable burden. This is a serious disease, and is costing the lives of the worst affected. The stigma of the disease and the clinical ignorance surrounding it must end.
For Rare Disease Day 2021, we are pleased to announce an important milestone in our mission to progress accurate appreciation and effective investigation of PFS. After many months of work, we are pleased to launch PFSNetwork, a central resource for information regarding PFS.
pfsnetwork.org is an outreach-focused site that provides a clear information resource and a hub for the projects of the propeciahelp team, who form pfsnetwork. The site includes the following:
- A professionally animated and voiced explainer
- A powerful video compilation of six patients explaining the human cost of PFS
- Six individual patient video stories
- A clearly presented resource for important scientific publications about PFS
- Links to our social media (Twitter, YouTube)
- A new combined mailing list and blog
- Our five organisational objectives
- A downloadable covering letter and study pack for patients and their families to take to clinicians (located at the bottom of the homepage)
As we increasingly network with scientists, this resource is invaluable to our efforts. We hope as patients you will also find it a useful tool for raising awareness about PFS.
Please sign up below to stay in touch with us regarding our efforts and news about PFS
A watershed moment
The biggest challenge we currently face, by far, is a lack of awareness of what is actually happening to us. We cannot expect effective or appropriate research without this. This is a universal view amongst every professor we have spoken to over the past years. This is a watershed moment towards that goal.
Watch the new patient stories compilation video here:
Please retweet this video here:
Remember to like, comment and share our YouTube content, subscribe to our YouTube channel, and follow our twitter. You can also speak up today about PFS using the hashtag #RareDiseaseDay
Courage is only courage when it’s facing an intimidating challenge. Hopefully these new awareness projects and the bravery of our fellow patients speaking out inspires you to consider the importance of doing so. This united front, grounded in well presented personal experiences, is a real first for PFS. The hardest first step has been taken by these six PFS patients, including two from our team. We sincerely hope this brave step makes it easier for others. Please read on for a new way to do that together!
What’s next: Please volunteer
We are now seeking patients who are willing to chat on camera over the internet with Mitch about their experiences with persistent symptoms following cessation of Finasteride. This podcast format will form a “series 2” of patient stories for the YouTube channel, and further humanise this condition.
There are unfortunately many who stand to gain from the stigma of this cruel problem keeping it hidden away. Unless we relentlessly press the truth of what is happening to normal, happy and healthy people, we will not see the significant change we all desperately need. If you are willing and able, please help us to achieve this. We are asking those who feel able to volunteer their time and courage for this interview project. If that is you, please send a private message to @sugarhouse.
Our focus will now shift to building upon our networking over the past years to hopefully get the ball rolling asap on important research. We will also be pursuing analysis and hopefully publication of the survey data. We will soon be migrating our behind the scenes server technology. This should not cause significant downtime for users.
Sadly, our team has suffered many setbacks over the past year. Most significantly, the catastrophic effects of PFS on our worst affected team members has left us struggling to manage these burdens. I’m very proud of what we’ve achieved in spite of this. We hope to recruit more patients who are supportive of our aims to assist with moderation of the forum and help with projects over the coming months.
Finally, we want to say a personal thank you to Luis, Ryan, George, Damon, Rafael and Mitch for their amazing bravery. These guys are heroes. Also, thanks to the team for the hard work to enable this new resource. We believe this marks the start of a promising new chapter in PFS awareness.
Thank you all for your support and your ongoing courage in battling this condition.