I just got a tweet from the foundation that they have launched a brain and spinal-cord bank so that PFS patients can donate them to medical research:
pfsfoundation.org/news/south … n-program/
Depressing, of course, but seems like good news in that this could help accelerate current research efforts.
So is the Person who donated already dead or is it just a kind of ]advertising to encourage us to donate our brain and spinal chord ?
Good question, but I have no idea.
From reading the announcement, it SEEMS like they got an an actual brain and spinal cord.
“[SWBB] has received its first donation of the brain and spinal cord of a post-finasteride syndrome (PFS) patient.”
I also have no idea who the deceased PFS patient is, but I imagine it’s not Daniel Stewart because he passed away 16 months ago:
pfsfoundation.org/news/danie … 1976-2014/
Maybe another one of the patients in one of the PFS clinical studies took his own life more recently and his family – having read about Daniel Stewart – decided to try to help medical science by setting up a brain bank?
Anyway, all very tragic. But it seems to be a positive move in the right direction. The more that researchers know about the pathology of PFS victims, the easier it will be to find a cure.
It would seem this would primarily be useful if there were actual physical changes to the tissue, otherwise biochemical testing could potentially reveal as much.
What a morbid topic, however coming out of Texas I am not surprised.
If you plan on killing yourself don’t shoot yourself in the head I suppose…
Morbid, of course. And the paradox is this: No one would hope that any PFS patient dies of the condition. On the other hand, the more of them that do – and donate their bodies to science – the more hope there is for a cure.
The same is true about more people getting PFS. The more that get it, the more allies we will have.
Excellent yet twisted point.
Better yet, all of this will come to roost chez Kenneth C. Frazier.
My advice to him is this: Start orchestrating your exit now – while you can still cash in your stock options. Otherwise, it’s Bill Cosby time!
This is interesting. They have a specimen already, probably Daniel M. Stewart?
It may be possible to compare his 5a-Reductase gene to others and so to root out some of the hypochondriac wierdos who make up so many of the study participants.
No, I don’t think it was Daniel Stewart, as I seem to recall some family member saying he was cremated. And would have been well over a year ago.
Must be come other PFS suicide.
I definitely think it could be, he was one of only two suicides that I’m aware of. Daniel was also from Texas like the SWBB. He was also in contact with Mohit Khera, who got his MD at the University where SWBB is based. Plus, isn’t an autopsy required for all deaths outside of a hospital? Surely some of his brain tissue may have been stored and may only recently have been passed along.
Anyway, I hope it is his tissue because I found him very believable.
The problem is, the names of the deceased are always kept confidential, so we will likely never know who these poor souls are.
I agree that there are probably many hypochondriacs on here, but I don’t see why you think there will definitely be common genetic anomalies in the 5ar genes.
I’m not saying there definitely will be. But its an obvious place to start and that’s why its being tested.
Of course there are many 5a-reductase gene mutations known. But if trustworthy participants (Daniel M Stewart, ‘Jorbie’, etc.) share the same or similar 5a-reductase gene, and untrustworthy participants do not, we will be on to something.
I suppose my main point is that this fact may be lost on the scientists performing the study if they don’t know who is a weirdo-hypochondriac and who isn’t.
But we should assume that there’s a rigorous screening process the SWBB does before accepting donations – medical history, medical records, etc.
We know that Daniel Stewart DID participate in the Baylor study, so Baylor screened him in the first place and also has his tissue samples from his participation in the study.
Hey Oscar,
what’s with all this “weirdo hypochondriac” nonsense . Attitudes like that resulted in people with this condition being ignored and mocked for a long time . People’s lives are devastated and you continue belittle them.
Yes that is peoples attitude towards this condition. But also the majority of posters here are hypochondriacs.
They are also taking part in studies/legal action/visiting PFS doctors/giving interviews etc. etc.
I blame them these people for perpetuating my condition.
Hopefully gene tests can finally exclude them.
Not sure what you’re implying here: “taking part in studies/legal action/visiting PFS doctors/giving interviews etc. etc.”
Are those good things or bad?
I would say they are all good things.
Yeah fighting back in all this is very tough. I did a TV interview because I thought it was the right thing to do. Our only hope of survival in all this is exposure and to get the right people on board. I contact AR researchers and epigeneticists daily to ask for their help. On top of spreading the word, we all need to be contacting those on the cutting edge of research and to tell our stories.
I wish it were that easy – just a few guys calling up researchers and asking them to do studies.
But the truth is, even a small clinical study at a halfway decent medical institution costs well over $100,000. And typically more like $250,000.
Where is that money going to come from?
In the case of the of the foundation, they put up private family money of about, I figure, $1 million for what’s in the works right now.
And then you have the issue of IRB (internal review board) approval. Even if one lone researcher wants to study some niche subject matter (like PFS), the university/hospital board of directors has to approve it. And that often takes a lot of time, and there’s no guarantee they will OK any study. Typically, they are looking for studies that will of course advance medical science, but also advance their own agendas.
Anyway, be thankful for the research that IS in the works, and has been funded by some well-off families.
Who sat this is the case… How do YOU know that they are hypochondriacs… since when is it your call as to who is sick and who isn’t. …