Anyone else notice the disconnect regarding symptoms on PFSfoundation.org and this website? Is anyone communicating with the PFSfoundation website owner? Their website seems like child’s play compared to symptoms listed on this website. I just want to public to fully understand the scope of this problem.
2 Likes
I do agree they really only cover the sexual sides not the extreme fatigue and other physical side effects.
Unfortunately the full extent of the symptom profile is very poorly understood, even within the patient community, given that the clinical endpoints can vary significantly in site and severity. This is particularly concerning with regard to certain scientists who exclude the daily reality of what we have seen and personally dealt with for years. We are addressing this with the survey which the foundation are very supportive of. Awor and I do have calls with the board (Awor is a founding member) so rest assured the physical symptoms, which I know personally can be absolutely devastating, won’t be swept under the carpet. I’ll have a chat about it next time. Do keep in mind the foundation is a patient resource and a vehicle for funding research, so don’t worry too much if your symptoms aren’t on the list - they are not presenting it as exhaustive. You could always email Phil, the foundation’s pr/patient contact, to let him know your feelings if you wanted to.
Best
2 Likes
Appreciate the feedback! I’m glad to hear that you’re considering submission of our recent survey. I think the information will be enlightening for sure!