How many HPPDers on the palnnet?

[must-be-a-way-to-heal]

I would be curious to estimate around how many people endure HPPD...

 

I am also curious,,,, with this number of people... It it possible to all join forces with some type of plan, to take action to bring about some kind of reaserch / cure...

 

What would be the most useful way to achieve this...

 

Through public awarness

Through Raising finds for reaserch

Through reaserch trials...

 

There may be was to raise capital through various means...   i was checking out this site just the other day...

www.indiegogo.com

 

Tho.. something needs to happen soon, other wise it will be the end of my life LOL    i need to make the very most of this lifetime its important to me... anyhow will stop the rant.

 

Have just started seeing a Neuro phychaitrist : http://theconversation.com/profiles/harry-mcconnell-6536/profile_bio    this should be intresting... He said to me he thinks he can fix it.... and seems to be switched on...

 

ya fingers toes and balls crossed lol

 

 

[onedayillsailagain]

I'd say step-wise the plan of action would be roughly as followed:
 

1. Inventory of HPPD sufferers
2. Inventory of those able and willing to contribute, and their skill-set+interests etc.
3. Create a dynamic platform for those to communicate openly (well this forum is somewhat like that, but I mean a faster means of communication.. Like an IRC channel or a video-conference channel)
4. Education. Collaborate to make an introductory guide to HPPD, from basics in lay-terms to neurological theories, etc. so that those who want to contribute have a single source of information, and don't have to go from one article to the next to understand the underlying mechanisms. I mean this forum is great for discussing theories, but it's all rather scattered and it can be time-consuming to start from scratch learning about HPPD. Some sort of HPPD-wiki would be great for this. I myself have played with the idea of making a new website for this purpose, but it's quite the task to complete by yourself. It could also have "The beginners guide to HPPD" with "Chapter 1: Fuck, I might have HPPD. What now?" which covers diagnosis, how to deal with doctors and family etc. To give you an idea, that is. Also, there could be a separate section for doctors and professionals, and maybe in collaboration with HPPD-experienced professionals it could encompass a clinical review of HPPD, and contact details for intercollegiate advise. 
5. Funding. Not to finance 3rd party researchers. They don't have an intrinsic incentive to research HPPD. No, the funding would be in the form of donations, and members of the community could then vote about how the money should be spent. Think website-hosting, accessing scholarly papers, of even a fund-raising for HPPD'ers without insurance so that they can try medication too. I know there are some who simply cannot financially afford treatment. Donations needn't be monetary per se. Those with programming skills could help with the digital side of things, those with free time could donate their time in educating themselves so that they in turn can improve the overall knowledge about HPPD. Those who are multi-lingual could help in translating texts so as to reach a larger audience. Money could also be collected to host some annual meeting for example. Those with skills in law could help avoiding the absurdities of the law (copyright nonsense and all that can be an obstacle). Those with financial skills could help in finances and setting up some form of non-profit organization. Those with skills in writing and journalism can contribute to media-awareness and conducting surveys. Those with multimedia skills can hep making educational video's for those who have trouble reading. Etc. etc. etc. You get the point. Anyone can contribute in their own way, not just by researching neuroscience, which for many is can be a confusing, daunting, boring subject.

Something along the lines of that. The only hindrance I can think of is the fact that many with HPPD have debilitating co-morbid symptoms like cognitive dysfunction, which could be a bit difficult when trying to organize such things. Yet I believe those with HPPD are far more motivated than finding a solution than a researcher who can't imagine what it's like and might have conflicts of interest. As such, indeed "joining forces" is a good idea. The method of how to do so however is still open for debate. Another thing is that perhaps there aren't sufficient people interested to accomplish this. Moreover many of us have a hard time just getting through the day, let alone take on such a project.

Also, by cooperating with drug-related websites (like Erowid for example), there would be more public awareness. People who first acquire HPPD won't have to google vague shit like "MDMA brain damage" or "distorted vision drugs" or "LSD reality change". Rather, those posting on drug-related forums inquiring about post-psychedelic issues will be more likely to be directed to the site because of it being part of the "network". Getting a well-written article in the Erowid newsletter, for example, could already help a quite a bit.

Well, it's not perfect. Just a sketch really. But I think that would be far better than simply asking money for research.

[speedy_gonzales]

Sadly for us Researchers/Doctors/Scientist are more likely doing research on Cancer,AIDS,Alzheimer,Parkinson... or any other disease where they get funds from big pharma companies rather than HPPD.

 

A lot of HPPD sufferers don't trust themselves to go to see doctors because they are ashamed or try to cope with it alone, those who go to the doctors are also often misdiagnosed. Most of us got HPPD through the use of illegal drugs so it's a bit our fault if we got it (at least it is what the society thinks). 

 

I agree with most of what you guys said. The article that what published in The New Yorker is a good start but it's like throwing a stone in the water. We need more stones to make bigger waves. So if anyone knows a journalist or has connections please spread the word. Obama's brain mapping initative is also something to watch for it will certainly reveal a lot of things on how the human brain functions, unfortunatly it's probably gonna take a few decades.

[must-be-a-way-to-heal]

ok that was a great post  "onedayillsailagain" it sounds aweosme , i would like to see something like this take place .... it would be great to start to cloaberate to make something like u describe happen.