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This is our guy


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Well, someone able to articulate hppd in a clear, comprehensive manner would have to draft a letter and send it to him. I've asked for help in this regard in drafting such a form letter and willing to contact anyone I feel would be instrumental in getting attention from the scientific community but nobody seems to give a shit.

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"Visual" seems to be clued up about the medical side of things and is very articulate, maybe you can PM him about your thoughts for moving forward.

 

Please refrain from phrases like "nobody seems to give a shit" though.... It helps no one and is just inaccurate.

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Well I've put the message out there but nobody responds.

What should be a portal for advocacy and outreach is just a place for people with one of the most horrible conditions imaginable to just vent. It's stupid. There is no plan in place toward progress so if I use the truth to get my point across I'm sorry, ok?

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Saying no one gives a shit is not "the truth" though, is it.

 

Do you really think this doctor will only reply to someone who can fully articulate this disorder? Why assume such a thing, why not just email him and find out? If he is sympathetic to our cause, i'm sure he will understand that we are not all scientifically minded.

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No Jay, it is the truth. I've been suffering with this crap for almost 20 years and there is nobody doing anything about it apart from Dr. Abraham who is facing retirement and David God bless him who suffers from both hppd and ADD. The odds are incredibly stacked against us. I've tried to do outreach work on my own and sent probably 1000 emails to clinicians speaking in lay terms which got me a handful of General interest but that's it. If we want help we need to get organized. A form letter to a researcher like the guy up top is a start and a database of who is contacted and their professional focus. Sitting around crying does nothing. We have to act.

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Maybe I'm on a different forum to you then, as I see a bunch of people who are desperately researching, helping each other and even guinea pigging themselves in an attempt to better their condition. Always sharing their conclusions, for better or worse.

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Yeah but to what end?

Coping?

Science is making progress in neuroscience and Dr. Abraham made it pretty damn clear that we won't see any relief until attention is paid to this disorder by means of research. You're not on a different board but a different planet altogether!

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If each of us filled out a form letter and sent copies to all the various researchers and institutions that might have an interest in hppd it should help

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ok, let's put our differences aside and work something out.

 

Why don't you put together what you propose we send to this guy and we can try and make a proper document to send over. I am not very good with the scientific/technical aspects of explaining HPPD, so maybe Visual or another member can help out there. I can help with the more emotive stuff and also help with the structure and language, if needed. We can then use this document for many different applications.

 

I would suggest the following, but I am open to suggestion:

 

An introduction about who our community are, with a brief outline of what HPPD is.

A more in depth, scientific description of what HPPD is.

A description of how HPPD affects it's sufferers.

Current treatments and known ways to minimize symptoms.

Future treatments and theories of possible cures.

A request for help, a final summary and thank you.

 

We could possibly add in case studies too, as this document grows.

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Jay-that's perfect.

With a letter like that in hand I will email and snail mail anyone who is doing any research that has potential to directly or direct alevitate or potentially cure hppd. I suppose something along those lines should be added.

Thanks for summarizing a well thought outline.

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I have made a start here.... I will add to this over the course of the next few days:

 

https://docs.google.com/document/d/1g4LNSB644YAb6Md152pdVLYJl04B8RE7Efw-joYSVIk/edit?usp=sharing

 

I have enabled editing for anyone with the link, but it might be worth making the edits or suggestions on this thread before we change the actual document?

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I'll pay to host a Website that deals specifically with recruiting scientific interest. Can use iWeb to create a website but I need the content

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I'll try to help. I'm good at tracking down clinicians doing work that might be solvable to our predicament or drug companies working on therapies that could help. If they get bombarded by emails it might steer some attention our way. Was thinking that either through this portal or another that we could have member work with local PTA groups and speak to kids about hppd.

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  • 2 weeks later...

Respect to all those who are doing something so constructive to bring our cause further. 

Just a suggestion: would it be an idea to start a thread exclusively for posting the names of clinical researchers whose work looks relevant to HPPD? I know these links are dotted all over the website at the moment.

 

It could be used as a database for the eventual form letter to be sent out. It may help to keep track of which clinicians have been contacted and which not. Once we have a comprehensive list, then we could start the bombarding. It could also keep track of which ones give positive/negative response?

 

There must be such a wealth of suggestions out there already from all our individual Googling. It may also be just easier for us to post and consolidate here first, rather than write off to random clinicians individually?

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If there is one thing I'm good at ots sourcing compsnies and researchers who may be doing work about HPPD. Jay helped me start a thread which contains a link to a Google doc that is meant to be a form letter which tries to garner interest in HPPD and/or recruit technical expertise in our condition. One the letter is complete I will compile a lay for sufferes to e blast these contacts.

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