Please read this guide in full to make and submit a video for our YouTube Project.
If you already have a video to submit, or have further questions, please send a message to @Northern_Star, @Dubya_B, @Greek or @Sugarhouse . Please do not upload it yourself, as these are to be presented on our new channel together.
Introduction
We are asking patients with the bravery to publicly share their stories to make and submit to us a video that will be part of our YouTube series of patient stories. It is important to have our voices heard together in a series of individual videos which we will post and promote on our upcoming YouTube channel. We already have 5 completed and edited videos, and the more we have the more powerful it will be. This series will be supported by an animated explainer video the team are funding and will be produced in January 2021.
Submissions so far: 5
It is very important we present what we are having to deal with on a day to day basis in this series of patient videos. Promoting a series of concise and engaging individual videos will provide a compelling presentation that will be far, far more impactful than videos scattered on various different accounts. As with the transformation of this site and the projects we are now undertaking, we are far stronger together.
The intention of this project is to spread the word beyond the patient community about this serious disease. We want to focus on you: Your story. As a community we desperately need to show this is affecting real, ordinary people that others can see had valuable lives, and ensure PFS is not able to be dismissed for much longer. With your help, we can turn this unacceptable situation around.
Recording Tips
Please record a 1920x1080 resolution video in .mp4 format. Please try to record this video with the best technology you have available to you to make the video and audio as high quality as possible by putting forethought into your recording strategy. For instance, you could ensure you consider your lighting to make sure you’re not washed out or sat in the dark. Consider your spaces to find an uncluttered backdrop and quiet recording environment. If your equipment is poor, you could borrow a slightly better camera or microphone if these are available to you. If your only option is a smartphone, please record in landscape mode and consider ensuring its stability with a mount . If you are at all unsure about the how to go about recording, please reach out to one of the moderators listed below for advice.
Establishing Statement
We suggest that you include a clear opening statement such as “I have Post-Finasteride Syndrome” (without any “ums” in between). This helps us to contextualise shorter clips when editing for other media platforms. You can state something like “my name is [first name] and I have Post-Finasteride Syndrome” but only if you’re comfortable using your first name.
Video Template
Below is a template to consider when structuring your video. Consider drafting your answers first, and making notes to help you record. Keep the video short and concise, aiming for a maximum of around ten minutes. Try and make sure you’re speaking clearly, but don’t be afraid to show your emotion about your experience. The goal of this project is to get the truth out regarding the human cost of this condition. Feel free to re-prioritise or add things you feel are important to this suggested list:
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What dose of Finasteride did you take and what for? How old were you when you started taking the drug?
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When did you feel something was wrong? What are your symptoms and how did they develop? Please be thorough.
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How long have you had these symptoms? Have they changed over the months or years?
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Did you report what happened to you to a doctor? What did they say?
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Have you tried any treatments or had clinical tests?
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Are you aware of other people who have had similar lasting effects from the drug?
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Have your symptoms had an affect on the person you feel you are, your lifestyle and/or your interests?
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How has PFS impacted your relationships with friends, family and/or romantic partners? Do your family or friends know about this?
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Has PFS impacted your ability to work?
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How do you cope with your symptoms? Has the structure of your days and weeks changed?
Submission and what not to include
Editing is provided by our team. We will tidy your upload into a final product for the YouTube channel, including possibly adding ending logo splash screen with links to resources such as the site. Therefore, don’t worry if you slip up speaking during recording - simply pause and restart your sentence and we’ll fix it. We can review any edits with you for your final approval before publication if you request this. By submitting to this project, you agree that what you submit is provided to us under the user content license described in the propeciahelp terms of service. We will remove anything out of line with our forum guidelines. The point of this project is to present personal stories credibly so please do not discuss or suggest alternative therapies you may believe in, other patient websites, or personal etiological theories beyond published literature on the subject. Videos including these things cannot be submitted to this project, nor can they be promoted on this website independently.
Ready to submit your video or have further questions? Contact the team
If you are ready to submit your file, have any further questions, or would like any help or technical assistance making a video, please do not hesitate to message @Dubya_B, @Northern_Star, @Greek or @Sugarhouse . You can click their usernames to send them a message.
Non-Finasteride patients
We are creating and promoting a series for Finasteride patients. While we are laying groundwork for the bigger picture, we hope to serialise stories of the lasting effects of other anti-androgenic endocrine disrupting substances when we have made more progress.
Kind regards and thank you
– PH