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!