Written stories for awareness

I hope everyone reading this is doing as well as possible.

As Axo announced in an update at the end of last year, we will be launching a new awareness site and YouTube channel. We have chosen rare disease day (end of Feb). We will post amongst other things, a series of videos recorded by patients detailing how PFS has affected their health and their lives. The importance of sharing individual human stories of what people go through on a daily basis due to this condition, together, cannot be overstated. An unnecessary burden that comes with PFS is a lack of awareness and understanding. This is a tragedy and a practical barrier to the adequate medical recognition and social support many patients urgently need.

If you are not able to record a video but still want to help with awareness, you can still help humanize this problem by writing about your experience for publication. This can be powerful too, and would certainly help us improve the state of affairs. We will be publishing a series of stories on our new site, which is geared towards raising awareness and will be used in our outreach and networking efforts to the media and medical professionals. If you are significantly affected by PFS and willing to do this, please send a private message to myself @borax, @Sugarhouse, @Northern_Star, @Greek or @axolotl. Also, please only comment to bump or ask questions if you are looking to volunteer and need clarification or help getting in touch. We would like to keep this clutter free!

When writing your story, please consider answering the following as a guide:

How old were you when you started taking the drug, and how old are you now? (can be approximate eg “early twenties”)
Please say a little about yourself before use of the drug and what your life was like before taking Finasteride.
When did you feel something was wrong? How did your symptoms onset and develop? Do you have lasting cognitive, physical and/or sexual symptoms - what are they? Please be concise but thorough.
How long have you had these symptoms? Have they changed over the months or years?
Did you report what happened to you to a doctor? What did they say? Have you tried any treatments or had clinical tests?
Have your symptoms had an affect on the person you feel you are, your lifestyle and/or your interests?
Has PFS impacted your ability to work? Has the structure of your days and weeks changed?
How has PFS impacted your relationships with friends, family and/or romantic partners?

Thank you very much!

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I hope to be able to finish my story this week.

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Cheers Wintermoon, thank you so much for making a contribution!

I am definitely going to contribute myself into this. Thank You for putting so much effort for the awareness.

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Thank you for making a contribution!

Hi everyone,

I hope you’re all doing well.

As mentioned by @borax above, we’re very pleased that our new patient organisation site, YouTube channel and socials will be launching on Rare Disease Day, 28th of February. This is another important step towards the recognition and understanding of our condition, and I’d like to thank @axolotl and the staff team for all their hard work.

WIth the courage and bravery of forum members, we have created some awesome content which will help drive awareness efforts. It’s not too late to contribute, and I would encourage anyone who wishes to speak publicly about their battle with PFS to check the YouTube video submissions thread here: YouTube Video Project: Guide, Template and Submission Instructions and contact me via PM. We currently have 6 submissions, for which I’d like to thank the contributors, but launching our new site and socials with more could genuinely help us pick up steam fast.

Myself and another staff member have contributed, as we strongly believe these stories are one of the most effective ways to raise awareness about our condition. It’s a very simple act, albeit incredibly challenging, but it requires nothing more than a phone and your courage. A Netflix documentary is unfortunately, not a viable option for us. A sea of user-generated content flooding YouTube about the dangers of finasteride, most certainly is. I would challenge you all to at least seriously consider making a short video.

If you aren’t up for that, it’s absolutely fine, and we would instead encourage you to write a story as per borax’s post above. We’d love another few to really knock this launch out of the park.

We’ll be back with another update before the day.

Thank you.

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Thank you for your hard work and thanks to others who contributed to make Youtube channel happen and who will publish their videos and written stories…This direction is the only hope for us.

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Hey can isotretinoin or antidepressants victims join?

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Hi @Victorcillo,

Good question and thank you for your interest. Unfortunately, we are only accepting videos from PFS patients at this time. There may be an opportunity for Isotretinoin or Antidepressant patients to contribute in the future, so I will reach out to you via PM when appropriate.

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