@Dela It’s an important advice! The best websites must be found! Tell it to the staff. We all sit in the same boat. We all want awareness for our suffering and fundraising for more research. If you don’t break the rules discussion is free. Make a new topic of this.
We’ve had a hard enough time getting 7000 patients registered on various online forums over the years to contribute to anything remotely coherent that advances scientific understanding, and less than 5% of total donations to the PFSF came from patients.
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This is shocking to me. Who the heck else is donating to PFSF other than patients themselves to the amount of 95% of donations. The majority of people I tell don’t even believe it’s real. It’s hard to get them to even watch the youtube videos and add a comment. The only way this disease is going to be legitimized is when it is accepted by the medical community. Then we can get more donations and grants even. Hopefully litigation that would amount to a financial payout by big pharma to further our efforts to finding a cure. You are 100% right that we need everybody to pull together, fill out the survery, report their symptoms to their regulatory health authority and speak publicly on camera. Awareness is the first step which will hopefully provide the means to finance enough research to prove PFS is real beyond any doubt.
The majority of the PFSF funding, sadly, came from wealthy families of patients who are no longer with us. It’s publicly known that John Santmann himself contributed $500k USD when starting the org.
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The patiens are often young men between 18 and 46 yo. They struggled in their jobs often and have not much to donate. Otherwise in bloodworks and treatment flow thousands per each.
Since Mitch joined the staff media / YouTube presentation developed enormous. Maybe @Dela have some thoughts wich can be discussed. We all need time to bring us in constructive in the community.
But how more we are as greater the awareness. And even to discuss here brings traffic on the forum, sometimes new ideas. Nothing than a dead forum prevents visitors and lurkers more from sign in. That’s really a fact too. For me it would be interesting to hear about all the old cases and their development.
@Sugarhouse next podcast release will inspire more forum member to speak out public. These going to rise more awareness to our cases.
Let the users have discussions, traffic on the forum is important for donation, scientists, media awareness and health organisations as important as more users.
There is more to come, and some of the things @Dela has mentioned will likely form a part of our awareness strategy moving forward. Unfortunately as I mentioned in another recent thread, we are currently roadblocked by administrative delays in registering our charity.
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My question I suggested just to @Hanru_Sun
But in China propetia is sold. China has 1,5 Billion inhabitants and you are the only chinese boy on this forum?!
Modern Chinese all speak and write english, why the other pfs cases do not register. …
(plus 2 at the chinese language subforum)
From Traffic Milestones on Anual Report, pfs foundation website
- Monthly visits China: In July we hit a record high of 2,667 unique monthly visitors to the Chinese edition of our site , up 214% over July 2020
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I think it’s important, that we as a community need to think more out of the box and come up with new ideas. Also contributing to the existing community projects.
Even with small numbers if everyone do their part, we can make a lot of progress. It’s also important to never lose hope and try focusing on the positive things in life.
I’ve tried reaching out to a lot of people and also other communities to see if they are willing to help us, this hasn’t been a great success so far but I will continue reaching out. I’ve done a lot of cold calling in the past and know that if you hit big numbers eventually you will find a buyer.
Besides that I’m also thinking to write an e-mail to the Turkish government about my problem and refer to the resources and research that the Propeciahelp forum provides. The Turkish government has helped patients in the past with a rare disease or illness. They have some of the best healthcare in the world and have a very helpful approach. Even if it only means a doctor speaking out, every little helps.
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That’s interesting about Turkey. With them being the hair transplant capital of the world you would think they would also have a lot of PFS sufferers.
@Exsexgod makes a great point about China and it leads me to believe that ethnicity may play a part in genetic susceptibility. The vast majority of sufferers that I have encountered have been caucasians.
@Hopeforlife0161 if you can complete the survey I know that helps our efforts.
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I think the opposite.
People always have ideas.
Never actions, always ideas.
We have enough ideas now, we need people to do things.
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The discussion about the ethnicity is only about a supposed genetic predisposition, nothing else!
In July we hit a record high of 2,667 unique monthly visitors to the Chinese edition of our site , up 214% over July 2020, they are no Caucasians. I thing unique users are more victims as one time visitors.
And @Hanru_Sun answered me: “No, in China we can directly access to propeciahelp website, the major obstacle is still language barrier, the most of modern Chinese has learned English in school indeed, but only a small amount of them can use it in practical, I am keep contacting with about 20 Chinese PFS suffers, many of them can read English and browse PH, but they cann’t write efficiently in English.”
We have turkish, japanese, korean and east asian Users. Some arabic from egypt , Dubai and Tunesia. I dont know the origin of Indian ethnicity. We have some Indian users. And there is the pfsf website in hindi with traffic.
And users from Brasil. Interesting that there seem to be no african victims.
So the majority is from North America, Europe and Australia.
But there are big europian countries like Eastern Europe (without Poland), Russia, Ukraine with no or only a few users here.
Same for East Asia and Latin America and Mexico.
But 41,500 new Spanish-speaking users, 12,700 new Chinese-speaking users, and 7,600 new Russian-speaking users on pfs foundation website.
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Indeed, They’re willing to help you even if you are in a hopeless place.
I am on vacation, I will fill out the survey once I get home.
That’s what I also meant ideas and actions, but more importantly taking actions.
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I don’t know exactly how “rare” this condition is. If we talk also about PSSD, Dr David Healy, in his article on Rxisk said that full blown PSSD seems relatively “rare”. But according to him, anyone who takes an SSRI develops some form of persistent sexual dysfunction in an mild form, some just don’t notice, they think what their psychiatrist tells them is true, that their sexual dysfunctions are caused by depression, mental health problems, and aging.
I believe there’s been one study on a specific SSRI that showed 80% or so developed sexual side effects (not sure if persistent).
But it seems plausible. Anyone who understand serotonin deeply would understand that SSRI doesn’t cure depression (which is a symptom, not a disease imo). But rather “mask” the symptoms due to the increased coping ability of the patient.
Basically artificially high serotonin makes it so a person would accept being in a shitty position. This has been shown in serotonin depletion studies, where low serotonin made people only accept fair offers. And it didn’t make anyone depressed either.
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where do these numbers come from?
From the PFS foundation 2021 Annual Address
By users i suppose they say random visitors.
Cause we only have had 300 surveys completed.
On the numbers the foundation give something doesn’t make up.
They say they attend 60 people each month, but we don’t have sn increase of 60 surveys per month
Yes maybe, we are all beaten by a very very rare disease! And without the foundation no one would care about us. The same with pssd and pas, but on the other hand 80% of SSRIs and 20% of Fin Users get side effects.
Glad to say I also did my part and finished the PFS survey!
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