Content/trigger warning for new website page: In memoriam

#1

Hey all,

This is an announcement to let you all know we are soon adding a page to the website, and to provide a content warning for you all in regards to it. This is a page that may be upsetting to some of you who can be easily stressed, as it is an in memoriam page concerning the lives and suicides of those who had suffered severely and persistently following use of the endocrine disruptive drugs covered by Propeciahelp.

It’s very important we present the reality of this condition to emphasize the urgent need to make progress to help those suffering and protect those who are not warned of this at the point of prescription. It is vital for the issue and the memory of those who have been lost that we do not ignore the fact that the physical and neuropsychological suffering severely affected patients endure after use of these drugs is costing valued people their lives. Some of these patients were historically members of this and other patient support sites.

It is apparent to us running a forum of this scale that mild or moderately affected members can sometimes be upset by what they read of other cases who are unfortunate enough to have very serious health problems as a result of these endocrine disruptive drugs. This presents a difficulty we cannot practically do anything to mitigate. As severely affected patients ourselves, we do our best to offer a supportive environment to every patient persistently affected by these drugs, whether the impact on their health and happiness is minor or major, and all individual stories are highly important and relevant. Therefore, we ask you to be aware of and manage your own psychological reactions to the content on this new page and avoid reading this page if you feel you may be upset by its content, which concerns those who have lost their lives.

As ever, it is important to be aware that PFS patients are affected with different symptoms to different degrees within the broad constellation, and as increasing evidence points to epigenetic involvement, the sites and extent of the symptomatic outcomes are not going to be identical between patients. Please keep in mind when reading the accounts and experiences of others that your prognosis and situation will not usually be directly comparable. Please remember the people you read about here are more than their effect on you and are human beings too.

There will be resources linked on this new page for suicide prevention services. Don’t forget that we’re all working as hard as we can to get the recognition and help we need, and never give up hope.

Thank you for your support, and most of all your support of eachother.

PH staff

18 Likes
#3

Thanks.

As someone who worked on writing about several of these post-drug cases, I can confirm that the memorial page warrants a strong warning and is not something you should read if you are in the early stages of this condition and don’t cope well or if you become severely depressed reading about some of the worst of the worst cases.

As Axolotl said, the stories contained within represent the reality of what many of have endured and what some of us are still struggling with. The gravity of the situation needs to be emphasized for the sake of encouraging the support we so desparately need.

5 Likes
#4

This is an extremely important initiative and I fully support it. Thank you!

2 Likes
#5

I second that. It is something that needs to be done, even if it might be hard.
Will probably take the warning seriously for my sanity though.
But essential initiative.

1 Like
#6

Is there a plan to include on the In Memoriam page or perhaps on another similar page the anonymous members of PropeciaHelp who have been lost to PFS?

#7

We could add a line about there being more suicides than listed, but due to inherent anonymity we can only do so much. I suppose one option is that we could add usernames of confirmed suicides at the end?

I have read the forum comprehensively more than once and there are quite a number of severely affected patients who have likely committed suicide. They described very serious symptoms, physical degeneration and expressed the desire to commit suicide before disappearing permanently. Unfortunately given the nature of the situation, we have no way to confirm what has happened to them.

This, like many responsibilities we are currently shouldering, should be the responsibility of the clinical frontline, and is one manifestation of the failure of appropriate diagnosis and clinical follow up. Without doctors correctly diagnosing, reporting and profiling patients (which from the FAERS data we know is not happening adequately), PFS patients lives and deaths are currently improperly documented by the medical profession and therefore largely untraceable. I’ll be discussing this at the end of the paper we are working on. Additionally, awor and I met with a scientist and helped obtain medical records for a publication on suicides following finasteride use that is in the works.

4 Likes
#8

In my extensive reading of the forum I too have come across many tragic stories of people who in all likelihood have taken their own lives. The scope of this tragedy, I believe, deserves to be brought forward in some form for the multiple of important reasons you point out at the beginning of this thread. We all know that PFS has caused a lot more 59 suicides, and I believe it is important to try to get as close to the truth as possible, as difficult as it is.

The forum contains important information about the true scope of this global catastrophe, which however currently remains relatively hidden to the public. It is true that anyone who wants to learn the truth about PFS can delve into the forum and try to estimate for themselves the prevalence of suicide in PFS. However, this requires a lot of work, which outside observers are unlikely to do. I believe we are in a position to do this work and help bring the truth forward.

In doing this, we do not need to claim (with certainty) the identified users have committed suicide, unless this has been confirmed by additional sources. What we can do, however, is compile a list of users, with the relevant parts of their stories, who have repeatedly talked about suicide, have failed to improve, and have disappeared from the forum. Everyone reading these stories can then make their own conclusion as to what happened to these people based on all available information.

2 Likes
Why are health authorities not investigating PFS?
#9

I’ve read the Memoriam: Patient suicides. The write up for each person is lovely. Admins have done something special here.
It would have been nice to see a picture with each person but appreciate that might not be possible.
I was wondering if we could have a general list of names etc somewhere on the forum of all those deceased. Maybe we could post a message of condolence underneath.

4 Likes
#10

Thanks - it was a group effort. I think I can speak for the other mods in saying that we have tried to show something of the nature or background of each individual. We lost a lot of good people.

5 Likes
#11

Maybe you want to add Nick Barrington’s suicide in 2016 to the “In Memoriam” page:

It’s possible that you already saw this thread but had no way to confirm this suicide, but just in case I post this message.

1 Like
#12

Unfortunately that seems to be the only available information, and the video was removed so unfortunately we have very little to go on to identify him.

#13

There was also a guy from Northern Ireland that died from PFS a few years ago I don’t think hes listed here but the foundation is aware of his death.