Find Help from Rare Diseases Associations

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anacleta
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Find Help from Rare Diseases Associations

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Let's try to increase the recognition of PSSD through these associations? Let's find out what they can do for us.

Search in your language on google "rare diseases" and contact by email or phone the associations or institutions in your country that deal with rare diseases.
We don't have to be anonymous, of course, and we have to stick to official information to be credible. Explain the situation:

Sexual side effects are really very common with SSRI and SNRI drugs, but here we are talking about the specific situation where these side effects are not temporary and reversible as they should be, but are persistent after suspension.
PSSD has mainly sexual symptoms such as disappearance of libido and excitatory response, numbness or anesthesia in the genital area, erectile dysfunction and anhedonic orgasm, but often there are also different symptoms of a broader post-SSRI syndrome such as severe emotional numbness, anhedonia, cognitive dysfunction and other symptoms that were not present before taking the drug. In addition, a bit like late dyskinesia from antipsychotics, PSSD can appear as the continuation of sexual side effects during the use of antidepressants, but in other cases it appears, or worsens, only when the drug is discontinued, and remains persistent.
There has been talk of PSSD in medical literature since 2006 with case reports and reviews mainly, only in 2019 EMA asked to update the package leaflets of all SSRIs and SNRIs, which are now updated with the phrase that "in some cases sexual dysfunction may persist after discontinuation of treatment". The etiology of PSSD is currently unknown, but several hypotheses have been put forward, including: neuropathies / ion channels alterations; neurosteroid alterations; receptor silencing / epigenetic alterations. For a quick consultation of the medical literature on PSSD: https://postssrisexualdysfunction.blogs ... ature.html
The significant overlap of symptoms between PSSD and PFS can be noted, so much so that the hypothesis has also been advanced that they may actually have the same underlying biological cause.
The condition may be so traumatic and serious that that several young people with PSSD took their own lives for it.
Medical research is moving too slowly, and it is necessary to increase awareness, recognition (there is still a lot of ignorance and disagreement among doctors), so that more researchers are interested in this mystery, hoping that a cure or treatment will be found soon for those suffering from PSSD.

At the moment, RxISK.org is committed to collecting reports of adverse drug events, and David Healy has published many case reports and reviews, and has opened a RxISK Prize. When this $100,000 is complete, if it cannot be a Prize for someone who has found a cure, it can be used for us, to attract media or politicians attention, get researchers interested, or perhaps fund the best research idea for PSSD. If we need a specialist to put his name for us on a valid initiative, I think he'll be there.

Also try to obtain information on the various possibilities of obtaining research funding from rare diseases.
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