RARE DISEASE DAY 2021: Announcing PFSNetwork.org, a watershed moment for PFS awareness. PLEASE READ AND SHARE

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

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.

Axo

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A massive thanks to @axolotl for all his hard work in what is an incredible milestone.

I also want to personally thank all of those who contributed a video story. As you can see, when presented together we have an undeniably powerful, human narrative, that is very sharable on social media. We encourage you to share it far and wide.

As one who contributed a story, I’m hopeful this proves to be the catalyst in encouraging more patients to tell their stories publicly. To do so was incredibly difficult, but the question I repeated to myself was “What do I care about more - my anonymity or my future?”. The answer was resoundingly the latter. I’m personally hoping we can have dozens of patients from the forum speak on the upcoming podcast.

I’d like to invite anyone interested in speaking to get in touch. It’s important that we continue to build on this momentum, and we need your help to do that.

Best,
Mitch

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I just had my crash a 5 weeks ago. Bmif it persists I will be willing to add my story

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Our tweet featuring the patient stories compilation is ranking in the top 15 tweets for #RareDiseaseDay. Please continue to like and retweet - it would be amazing to get picked up.

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We need more likes, shares and retweets. Visibility on social media is all about interactions. Help us be more visible!

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A huge thank you to everyone, who helped to make this happen.

Also thank you to every single one of you 6 PFS sufferers, who were brave enough to publicly speak up and draw attention to this problem… You are real men. :pray:

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Amazing work guys :wink:

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@axolotl thank you and the same to everyone involved. I hope this marks a turning point for us. The work and vids are truly amazing. These would bring the house down on even the hardest of people. If these don’t break down walls nothing will.

Everyone needs to share this far and wide.

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Sad to see that the What is Post-Finasteride Syndrome? vid and Luis’ story already have a few thumbs down. Why? Did they say anything inflammatory? Or did they get shared in a hostile community that’s trying to put us down?

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WTF unbelievable

Thanks to everyone who took part in the video.

I think showing the effects finasteride can have on real people will do more to raise awareness of PFS than any study.

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I think its mostly people with vested interests who down vote PFS videos.

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Whoever is doing so is paying very close attention to the forum I can tell you that much.

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I wouldn’t worry about it too much - it was always bound to attract the ire of certain people as it’s a hugely controversial topic. Just gotta take the L, move on, and invest your energy in things that make a difference. One bite of the elephant at a time.

Importantly, the patient stories compilation has 26 likes and ZERO dislikes. That’s the kind of content that will cut through and is indisputable, which is precisely why we made it. We need more of this, so again, I would encourage anyone who can to speak with me publicly on the new podcast series.

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I’ll speak publicly anytime.

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Incredible work everyone.

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There’s a problem with incels that they don’t believe some of us who already have full head of hair, i’ve read such comments like “lol, this guy is lying, he isn’t even bald and he’s saying he took fin, maybe he want’s money from merck”. That maybe a reason for the thumbs down i guess !

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Thanks to all of you from the bottom of my heart :pray:. U all are real strength to people suffering as bad as me.

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