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Tratments and Reaserch


OldSchoolAr
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Hi there HPPD Community.

 

I have been a member here for quite some time. I just had to change my usermane as i could not log in.

This is.. AKa "Benza" "Spartan"...

 

Wanted to send my regards to all fellow Hppd endurers..

 

Im also just curious if there may have been any news into possible new reserch or treatments. I know i "should" make a consistant effort to reaserch myself, and i will do.

 

If you could please share anything that you feel has been "useful" of "value" or "new" that would be awesome!

 

Many thanks !!

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ok thats great..

 

yeah just seems very disheartening..

 

ive had this now for over 20 + years or more...

 

ok ok..  i can still live with it, tho life would be soo much better without it..

 

Really seems like a waste of a life sometimes,, its very sad..

 

yeah yeah .. i  / we took the drugs.. tho fuck.. a 15 year old boy who was given acid by his elder brother would not know any better.

 

People need to get over.. "oh u took drugs", well pack your bags, we are going on a guilt trip,, We are all human, human suffering is universal.. Its a chronic condition, people should see that and activley reaserch..

 

Maybe we should make some noise somehow..

 

Fu*k this fuc*ing bullshit ...

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It's errone to say this condition is rare when it's grossly misunderstood, understudied, underreported and underfunded. Too many reports of HPPD casses in the literature that fit the mold but not given the label as there's no money for research. Creating a need, a sense of urgency takes work, work that the founder of this website did mainly on his own and after all his effort all that is left is a website; no foundation, no grants or scientific advisors because he was basically all alone. We reap what we sow.

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Ok, sure I understand what you’re saying.

I’m not sure how I could help David as he is in the US and I’m In Australia. Obviousley  money would help, thats something i cannot donate yet.

 

Is there some way / ways in which we can plan joint action now to bring about some of the outcomes we are looking for?

 

I suppose when we are clear about what we want,  we can then determine a group action plan of what needs to happen to achieve it.

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imagine our community being actively engaged in raising awareness about this condition to professionals in the medical field that could do research, the top notch variety, and maybe find the root cause of this crap.

 

This was taken from your Aggressive Advcory post ^^

 

Sure i can do my best to contact them, do we have a foundation email possibly that i could use to contact top people in Australia please? That would be really helpful..

 

What would be your thoughts of U tube sharing story to raise awareness? Attract help? I would rather remain unidentified tho.

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Unfortunately I'm not smart enough to accurately articulate hppd and sell it as a worthwhile project to unravel otherwise I would have approached every researcher and institution. This isn't to say I haven't tried but with my poor understanding of the mechanisms behind hppd, I probably embarrassed myself than did any actual good. There are several people on this board that could easily do it but to date nobody has stepped up.

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Sure.. I wish i was was smart enough also. I  wish i could educate myself enough on the topic so i could do it.

 

Anyhow.,. I do hope someone finds the courage to step up to it soon. I suppose its good to just keep trying, we may get nocked back until one finallys says yes. Thats usually how i approach things anyhow.

 

Is there any other creative ways we can think of ? Maybe telling in depth touching storys on utube and getting them out there may raise intrest and or awarness. Any other effective approaches we could think of would be great.

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Unfortunately I'm not smart enough to accurately articulate hppd and sell it as a worthwhile project to unravel otherwise I would have approached every researcher and institution.This isn't to say I haven't tried but with my poor understanding of the mechanisms behind hppd, I probably embarrassed myself than did any actual good.

 

That is an awesome effort ... Tho I’m curious....

Some of us have been inflicted by hppd in such a way that it may even make learning enough about HPPD to articulate it to institutions more challenging. Researchers and institutions should take this into account.

 

Also, I have found that a human being will often times relate a lot better to Story’s. "Facts tell, story’s sell." For example, if I went into an institution and said I’ve been enduring constant visual distortions for the past 25 years, from this F&*ked up disorder…. a group of us suffer from this horrible “disorder" something needs to happen quickly, we need help as a group please. Here are the facts and statistics we have so far. Please help us get the ball rolling etc. Those that have the know-how and intelligence can take it from there. Often time’s humans sympathise and relate more with another’s suffering + story. Through sharing our  greatest challenges we can create rapport.

 

Sometimes I just feel it’s not about being able to articulate. We just need to do our best with the resources we have now. Possbly when people hear our story’s they well relate more and it will strike them at more of an emotional level rather than intellectual.

 

Any thoughts?

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Ok cool, that’s sounds really great Jay! 

 

Exellent idea doing docters and current users!

 

I’m a current sufferer, I will share my complete experience and journey on Video.. 

 

Only one catch. I will have to wear a hat and sunnys as don’t want to be recognized for career and works sake.

 

That would be awesome, once done I will send the Video thru to you..

 

Thanks again lets spread the word B)

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Yea, anonymity is an idea I have juggled with too, I do alot of work with big brands and would lose work if my condition was known about, for sure.

 

It's a tough one, as I also feel the need to have a name and face attached helps, which is why I have always had my avatar on here. As you say, stories sell... and people connect well to facial expression. I think a few anonymous interviews would be fine though and would even highlight the stigma of the condition.

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Right on Jay.. I agree :-)

 

 

, but specially with mental diseases, and even more with drug caused mental diseases.

 

Dude... to me that sounds pretty harsh..

 

Do you honestley think that every HPPDer has a Mental Disease.. many Hppders are actually highly functioning individuals with succesful careers and Lives..

 

My understanding of HPPD is that its Purely a Visual / Perceptual disorder, that is Physical / Neurological.

I.e. a person’s mind set stays intact, that is not affected. It’s only Visual / Perceptual disturbances.

 

Id have to say.. its this kind of talk that actually makes me want to avoid this site at times. I understand that people are at where they are at.. and we all have freedom of speech..

 

Anyhow..

 

In my opinion we can empower or disempower ourselves greatly with the speech we use and the labels we place upon ourselves.

 

I agree with what you are sharing about career, work etc. Tho I feel there would be fun and creative ways to adequately conceal my identity so I’m not recognizable. It’s a risk I’m willing to take. Others may not be… and that’s ok.

 

At the end of the day. What others think of me is none of my business, i.e. who gives a F&*k. They are free to continue with there perfect normal and mundane existance...

 

So revealing that you have HPPD may be similar to coming out LOL

I’d have to say I admire people like David Kozin greatly for his attitude, fearlessness.

 

I agree Hope 1

 

I think it may be productive 2 set a deadline, this may force ourselfes to actually step up and use all our resources to get the job done...

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When I describe it to my wife, I use the term mental illness too, as that is how I feel... That my mind is ill/sick/poisoned.

 

This carries on from what I was saying about HPPD as a singular condition is probably wrong, HPPD is only the visual neurological condition, not any mental illness/disorder we might associate with it.

 

I think LSD caused my hppd and MDMA caused something far darker, that I always lumped into one condition (before I knew what hppd was).

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I love it.

You guys can sit around the campfire all you want arguing the particulars surrounding HPPD but it won't make a lick of difference.

Outreach

Advocacy

Funding

Results

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