Why is this site called propeciahelp

General Discussion
#1

I don’t know why this site is called propeciahelp…I haven’t found a single positive thread here. Some start out positive and end negative. Some extol a study and then there’s no followup. I’m not saying we should put lipstick on this pig but people coming here might expect help. But if they can read they will soon realize there is no help. Maybe call it pfsvent.com

Sorry, got some blood work done today but thanks to this helpful site I realize it was a pointless exercise. And also concluded that exercise is pointless though I’d already figured that out.

/venting

#2

I understand what you mean. I’m not sure how the creators came up with the name many years ago but some people might expect a solution based on the name. In actuality the site provides answers to many questions about PFS. Although the answers aren’t always what we want to hear, it is what it is. In my opinion the site helps us navigate PFS, see what others have tried, and avoid repeating mistakes of those before us. All valuable information imo. The emotional support is quite helpful as well. And then there is the research the site has been helpful in starting in the hopes of finding a treatment. Hopefully answers will come down the line. Hope you feel better soon!

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#3

Hope I feel better soon? I don’t have a cold, I have full blown PFS with rapidly compounding symptoms. My face and body are decaying by the day and my eyebrows are falling out into my food. FFS.

#4

The experiences of similar sufferers in this forum helped me in staying away from precarious and unpredictable drugs/suppliments which i might have otherwise used to treat myself out of PFS and possibly have fallen into another quagmire, it really helped me in realising that i am not the only one in this world with this condition. If u want help from propeciahelp in the sense like “Take this pill, u will be cured from PFS” then it’s impossible. Its a gradual process and may take many decades but as compared to a decade ago, this site is doing way better in raising awareness and initiating new research projects. Now it is not about how propeciahelp could help us, its about how we as patients could help the propeciahelp.

Your survey will definitely help the propeciahelp to find some help from the scientists.

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#5

Great answer.

There are a lot of great things happening, on both the research and awareness fronts. If you want to get involved, check out our website.

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#6

@mstone

I understand you may be frustrated by a previous response, but what @anon74895881 said above is unfortunately accurate. Patients looking for a quick fix will not find it here, nor anywhere else. Due to a stark lack of scientific understanding, much of the experimentation that has occurred on this platform and elsewhere for the past two decades has been completely blind.

Unfortunately the website was named back in 2006, long before the time of current administrators, and due to it’s searchability and visibility within hair loss forums and elsewhere, it doesn’t make sense to change it now. Perhaps the “help” means different things to different people, and isn’t necessarily indicating help for one’s symptoms will be found here. We can help each other and provide support, however.

You mentioned some threads extol a study without follow up. If you are interested in supporting scientific research, please check out our latest research project.

It sounds like you’re having a bad time at the moment. Although I can’t help with your symptoms directly, please hang in there. We’re all valuable and we can all contribute to finding a way out of this mess.

Take care,
Mitch

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#7

I don’t know how you guys carry on. I’m a middle aged man and my whole life up to a few months ago was a cycle of working hard, eating hearty, doing healthy activities, relaxing on the downtime, having beers with friends. All of that is gone, replaced with physical decay and panic. If I do anything remotely enjoyable I’m rewarded with more decay and panic. This is compounded by the fact that it isn’t a very sympathetic condition…people understand cancer. I think my frustration with this website and also the links to the studies (not to say it’s the fault of either) is that they underscore how hopeless the situation is. To conclude otherwise you have to be pretty young and/or inexperienced with life. Or maybe just a person of unwavering faith.

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#8

Knowing that this is a legit syndrome is helpful
Knowing that there are others in the same situation is helpful
Being able to communicate with others with the same syndrome is helpful
Seeing what has and has not worked for others is helpful
Seeing other users who use their time to contribute to foundations is helpful
Seeing other users who use their time to contribute to researcg is helpful

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#9

I think this forum is helpful mentally. It feels nice to know you’re not alone in your suffering, but I wouldn’t expect any kind of advice that will miraculously cure your condition.
If you’re just a few months in, then hope isn’t lost. You still have a decent chance of recovery. Stay strong.

#10

What are you basing that on? I have no DHT activity (no sweat or BO) and full wasting symptoms. I’ve read no examples of recovery from that regardless of duration.

#11

I think my frustration with this website and also the links to the studies (not to say it’s the fault of either) is that they underscore how hopeless the situation is.

This unfortunately is a pretty common mode of thinking for many patients - and it is absolutely driven by the symptomology of PFS. It’s pretty hard not to despair when your body is literally falling apart in the worst cases.

However, when many patients think the same way, hopelessness is a self-fulfilling prophecy. It creates a void where not much effort is invested by anyone, because there’s a sense of “what’s the point”. If everyone involved in this community - thousands of patients and their families - could manifest a semblance of hope and cohesiveness towards a shared objective of scientific understanding, we could objectively make a ton of progress on the issue in a short space of time. Think about the progress that’s been made by a handful of volunteers in the last year.

When you get closer to this issue and talk to scientists, you realise it is not going to take millions and millions to understand the underlying mechanism involved. Our latest study - which involves three scientists at the top of their field and cutting-edge investigative tools - costs 80,000 EUR. And one advantage of this disease is that its onset is driven by a very specific event and thus is much easier to model in animals, when the time comes.

I could go on and on, but my point is that this community hasn’t really given a cohesive approach a fair shake, and few are close enough to the specifics to understand what actually needs to be done to move things forward. No matter how grim things appear, they are changing. Like I said, we may not be able to help with your symptoms currently, but that doesn’t mean everything is hopeless.

What are you basing that on?

There does appear to be a cohort of patients that improve significantly over time, depending on the severity of their symptoms. Some seem to experience a rapid improvement in the first three months. I can’t say whether that will be you, but there is a stack of self reports from this forum to support this.

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#12

In which case it’s not helpful to post a comment like “If you’re just a few months in, then hope isn’t lost” without regard to severity of symptoms. Again, you’d have to show me an example of someone with all the wastage symptoms improving significantly within any timeframe, otherwise we’re throwing around platitudes and if there’s one thing PFS sufferers don’t need it’s platitudes.

#13

I don’t think anyone intended to cause offence. It really is impossible to say whether you will improve or not, so I think others are just trying to provide encouragement.

#14

Dude there are people here who are bedridden 24/7 who have completely have their life fucked and your bitching about fucking body odor. Put things into fucking perspective for once

#15

I’m bitching about baseless platitudes…I’m sure the bedridden folks don’t appreciate them either.

#16

Ok, i will be honest, i have exact same symptoms as u, just add “cannot walk without losing balance” in ur list and i am living with my brother’s family at this age of 24 where most of the people get married and start their career but since my muscles have become soo weak and atrophied that i cannot even hold a pen for a minute, i am barred to go out and do anything. I quit Fin 1.5 years ago and almost “nothing” has changed in my life, the only thing i got was “learn to adapt to this new life”. Humans have enormous capability to adapt to situations after sometime, i can guarantee after 2 -3 years, u will stop thinking much about pfs even if u still have all the symptoms at that time and atleast the suicidal tendencies will be gone by then… Meanwhile u can watch out ur diet and transition it into a healthy one and restrict urself from precarious drugs to treat ur condition, this is where things can get permanently worse ! Also stop wasting money on doctors to treat pfs if u go to one, they won’t help you with anything nor acknowledge ur condition.

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#17

Just a reminder to keep things civil in line with the forum TOS please. We’re all suffering so please be kind to your fellow patients, even if you are frustrated.

#18

Me. I guarantee you that I was in a far worse place than you at my worst. I’ve made a dramatic recovery so far and am continuing to improve.
I lost a ton of muscles and it felt like I was losing bones. My back was hurting, my liver was hurting, my stomach was hurting. My scalp was on fire and I was losing hair like crazy. Some weeks I couldn’t even sleep for more than 2 hours. I had bad reaction to almost every kind of food.

It is way too early for you to say that things are over for you.

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#19

Some seem to experience a rapid improvement in the first three months. I can’t say whether that will be you, but there is a stack of self reports from this forum to support this.

This. I was in a very bad state in the first couple of months, but I was slowly recovering.
Sometimes, I felt like I regressed or plateaued for months before seeing another upwards swing. I was living with insane back pain all throughout last year. It got better towards December, but it was still aggravating me almost every single day.

My back is doing so much better now. Most days, I feel no pain or discomfort.

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#20

To be fair, he does sound like a bad case, almost as bad as me early last year.

In any case, a few months in is absolutely nothing. I sometimes have to wait 6+ months to see any kind of improvement for some of my symptoms. My back pain, for example, lasted 1.5+ years, and there were months where I didn’t see any sort of improvement. I’d say I’m in another plateau phase in terms of my back situation, but it’s at a point where 99% of the time, I don’t feel any pain or discomfort.

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