What moves on the PSSD is up to us having the PSSD and not anything else

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anacleta
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What moves on the PSSD is up to us having the PSSD and not anything else

Unread post by anacleta »


All the little that happens for PSSD, i.e., the strides in outreach, recognition, and research, don't fall from the sky.

They always come from someone among us who has PSSD. This can make one feel even more alone and abandoned, but it can also make one want to get things moving.

Starting with the first researchers who reported this problem in the medical literature, who had PSSD.

David Healy intercepted the words of PSSD sufferers thanks to someone who insisted on describing persistent symptoms (the fact that he never let up then is a specialty of his) and was able to continue writing about PSSD in the medical literature because we compiled the Rxisk Report allowing him to collect more and more cases: https://rxisk.org/experiencing-a-drug-side-effect/

Melcangi discovered the existence of PSSD because he was contacted by someone with PSSD who noticed the similarity to post finasteride syndrome that he was already dealing with. Then someone else who had PSSD contributed financially to allow Melcangi's team to begin early research on PSSD. Now whether his research can move forward depends largely on the funds we are able to raise on the Gofund, https://www.gofundme.com/f/27l8qmes5c we who have PSSD.

New articles in the media?

I'm sorry but the answer is not "They are finally taking an interest in us". They don't come after us unless we go to them first. But don't go to them to ask "Can you please write about PSSD?" You need to clearly lay out the content for the article to them and be able to engage them. Even if out of 100 attempts only a few will get a result, that's something. If you are contacting scientific sites, present the content clearly and with the bibliography; if it is about sites that can tell the patient's experience, tell your story, talk about the community and give availability to be interviewed and to interview specialists or researchers already involved.

You see that a doctor has posted an article on his blog and an informational video about PSSD and you think he has done a lot of research in the scientific literature on PSSD. But more likely than not, he hasn't: he's been educated by someone who has PSSD (however, make him believe that he's an expert for you and maybe he'll be more tempted to actually become one, thanks to you).

Let's assume, however, that the media comes after us first. They didn't wake up with this great idea. They noticed us having PSSD because instead of keeping quiet we confront, report and do desperate experiments on this forum and on Reddit.

All of this is true in general and almost always: with researchers involved, with politicians doing little things, with patient associations already formed: someone among us who has PSSD has enabled it. 'Who' is a question closer to home, because even if PSSD weren't rare, we're apparently still a skimpy community. But that's also why if one of us has the time, energy, and motivation to commit to sparking something new, it's likely that in these little circumstances he/she will be able to do "a lot".
GIXXER
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Re: What moves on the PSSD is up to us having the PSSD and not anything else

Unread post by GIXXER »

I've been saying it for years, it's on us to be active and spread awareness about PSSD. We need PSSD to go viral. Every bit of awareness we do is one step closer to finding a cure.

Pssdforum has over 1800 members, if each member spent 1 hour a week spreading awareness that's 1800 hours of PSSD awareness that's been put out there for others to see. Eventually it will have an impact.
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