This picture comes from a meeting last week in Detroit aimed at tackling and solving the enduring sexual problems linked to Isotretinoin, SSRIs and Finasteride – See Enduring Sexual Problems World Congress.
This was a small but intense and exciting meeting. A great deal of the excitement was linked to some findings Will Powers, a Family Doctor, has come up with.
Everyone on the right hand side of this photo looks slightly shorter than they should and everyone on the left looks taller and bulkier. Will has dark hair and is second from the right in the back row.
A few months ago, he began reporting on social media that he had some interesting findings from the genomes of people with Post-Finasteride Syndrome. This caused a stir. No one was sure what to make of him or of the findings he was reporting.
He lives in Detroit – so inviting him to the Congress gave a bunch of us a chance to get to grips with him and his findings. The consensus was these are real findings, they make sense, and we could make progress by getting similar genome findings from people who have enduring sexual dysfunction after Isotretinoin and after SSRIs.
Lots of folk have been donating to PSSD Network and other Charities including RxISK’s charity to support research on these problems. In my opinion, at the moment money would be better spent on getting genomes – at least 10 to 20 Isotretinoin and 20 SSRI genomes to add to the Finasteride genomes Will already has.
We may also need genomes from some folk who have had Isotretinoin or SSRIs and have had no problems on these medicines.
Will has generated a Powers Genome Screening document linked here which is likely very different to anything you or most doctors have seen before. He has gone out of his way to avoid making claims that you stand to gain from being screened but there is a real sense in which you do.
Even if there is no genetic link to be found to these sexual problems, having a Genome Wide Screen is very likely in the near future to offer useful health information and be a useful tool for all of us.
That said, there is a good chance what Will is doing will shed light on the sexual problems we are dealing with and will inform further research needed to find a cure – in addition to highlighting things that might make things worse and that we should not be doing in efforts to treat ourselves or as research projects. – See Enduring Sexual Problems.
We need the following volunteers – not just to solve the injuries these drugs have caused but also because the findings shed a fascinating light on our sexualities and identities. So even if you are not injured and not providing data as a control, you may find what this effort reveals made it well-worth supporting someone who is injured or volunteering to be control.
- 10 or more folk with Enduring Sexual Dysfunction Post Isotretinoin
- 10 folk who have had no sexual problems after taking Isotretinoin
- 20 or so folk with Enduring Sexual Dysfunction Post-SSRIs
- 10 or so folk with no Sexual Dysfunction Post-SSRIs
In a follow up post – hopefully this week – I will lay out exactly what you need to get and do and where you can get it and roughly how much it will cost.
The costs are relatively modest – in total this should come to less than $500. If anyone is interested to get involved but simply does not have the funds, contact me on David.Healy@rxisk.org and we’ll see what can be organized. I can also put you in direct contact with Will.
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