Danielle------ GREAT! A perfect example of 'grass roots'.

I'd forgotten that you were in Canada---- and of course the language and the means of getting treated will be different.

"I just had a thought: how about we create a flyer here? I could easily translate it and make the information available here."

A good idea. Has some 'problems' associated with it------ in my past efforts to create flyers or info for another disease. :( It wound up that each person would make their own. They were all good but very different.

Maybe I shouldn't 'catastrophize' though. :)

One thing that I felt had to be paid attention to though: it has to be BRIEF. LOL Ever notice how so many people read just the first few sentences of an article? Which is probably why Twitter limits the characters. (grin)

I agree Cave: it has to short, it has to be catchy and it has to grab attention. And one thing it has to say: it can happen to anybody, regardless of risk factors and age. For me, that would have been a clincher.

Also, it has to lists some of the symptoms, in laymen terms: everything I've read out there, except here, has been that it is characterized by SOB. In my case, and I know that others have said the same thing, SOB only came into factor about 2 or 3 weeks after I had the first symptoms. Another thing it has to say: don't be afraid of going to the ER. Trust your instincts. I didn't, even though I knew that something was really wrong: I didn't have a very high fever, though I would have a high fever in the evening.

And I don't think it is necessarily wrong to adapt the flyers to fit your own "neighborhood" as long as it not to adapt to fit your own experience only.

Oh, and another thing it has to have, is pointers to sites, including this one and CC, where detailed information is available.

Oh, and writing is something I can do :)

"Oh, and another thing it has to have, is pointers to sites, including this one and CC, where detailed information is available."

Yes, links to good sites is important. The only problem with that (I'm a fixer not a follower, have you found out yet? LOL) is that unless it's a flyer/brochure a person can take home the links won't be remembered.

If it's a homemade flyer (like on a bulletin board) sometimes we put the links on detachable little 'tags' at the bottom of the flyer. Not pretty, but it works, most of the time. I've made up business cards that were 'attached' in a removeable way.

I've seen other creative ways to do that also.

There's always the 'get permission' factor. Don't forget or your flyer will be tossed. Doctor offices might be particularly hinky---- I know I would if I were a doctor.

There is a brochure on clotconnect:

http://files.www.clotconnect.org/DVT_and_PE.pdf

"Reproduction: Health care professionals are encouraged to share this educational resource with their newly diagnosed patients. Permission is granted to reproduce this brochure in its entirely by providing the .pdf to a printer of your choice or by placing the .pdf on your organizations website. Health care professionals are also welcome to affix a sticker to the print brochure with their practices information, such as This brochure provided by Our goal is to facilitate this important educational information reaching as many newly diagnosed patients as possible."

------ which anyone can download and print. However, as good as that is, it's for 'newly diagnosed' which isn't exactly 'information to the public' that I'm talking about. (recognition) but it ain't chopped liver either.

An important point brought up by Danielle:

"adapt the flyers to fit your own "neighborhood" as long as it not to adapt to fit your own experience only."

Agreed. Testimonials presented here are the way people 'connect'. But it's not 'science' because everyone has a different type of story to tell from their unique vantage point.

We need to avoid big words like thrombophilia too. LOL

I like that your a fixer Cave... that's kind of what I am too :)

Yes, getting permissions is a good point. And it's one of the reasons why the group I volunteer for hasn't gotten the message around as much as we want to: in our case, some funeral directors are categorically refusing to let us :advertise", mostly because others are displayed prominently, as they are huge donors. And that's one thing we need to stay away from: do not advertise for drug companies, for instance.

I was thinking that take home pamphlets are the best thing we can do. That way, people would take it home and do the research, though, of course, not everyone is like me LOL. I tend to research everything, just in case.

Advertise for a drug company????? ROTFL They own their own lobbyists to do the advertising. I remember looking up how much certain drug manufacturers pay for 'their'lobbyists"; talk about lavish!

You said:
"I tend to research everything, just in case."

Smart lady. I do too, only I make the mistake of posting it here. LOL Seems that's not appreciated by some.

BTW---- I never got a reply from RetNav re: hard copies of the CC blood clot educational materials.
I know he said that a health care provider can get hard copies.

I asked:If my healthcare provider wants hard copies----- is there a charge for them? And is there a limit to how many he/she can get?

RetNav, are you here? I know I can call myself, but just in case you know, that would save bothering Beth, if you already know the answer.

I was also thinking that another pamphlet would be a good idea, one aimed at PE survivors. As we all know, information on PE recovery is practically non-existent and is certainly not coming from doctors!

So, just a little blog-style pamphlet with information on recovery covering such things as the roller-coaster ride of feeling better and feeling worse, SOB, pains, fatigue, fatigue, etc.

Having such a document may help reduce the anxiety that is so much a part of recovery.

In case you missed this, CC has a good pamphlet that a person and download and print out at their own printer. It's pretty good but it's fairly long and might be an 'ink eater' when reproduced by the dozen.

CC can't send us copies due to lack of money, not even for advocacy.

http://files.www.clotconnect.org/DVT_and_PE.pdf

But it's almost TOO comprehensive as a starting point. Were you thinking a shorter one but with a link to the CC pdf?

And with copyright laws copy/pasting just parts of it might incur the wrath of CC. You never know. There is something at the end of that pdf. that states "All rights reserved".
(Yes, I always read the bottom of articles. LOL)

That's a fairly archaic term now and because copyright laws are convoluted and not fully understood it still leaves a question in my mind.
That pdf doesn't say 'creative commons' and the EFF (Electronic Frontier Foundation) doesn't have a clear cut answer to that specific question either, at least found easily.

Usually copying just parts of a larger document is allowed (EFF) as long as attribution is given. But that also depends on who is looking over your shoulder and wants to be an obstructionist but that would involve court appearances.

But we ARE told we're free to copy and print it out----- which leads me to believe that CC wouldn't take action. But it is a dichotomy.

Different topic:
For people not dx'ed yet.

As I mull this over the problems emerge, not that I hadn't known about them, but specific to a flyer.

Just like Lyme, the symptoms mimic so many other conditions.

Doctors do not usually respond well to a patient asking them to perform an ultrasound of the legs or a d-dimer when that doctor has dx'd them with asthma. LOL

ER docs maybe a little less, maybe a little more of a response. Remember an ER doc is usually intent on you not dying on his watch than a correct dx for a complex condition. LOL

Almost everyone presents with different symptoms.

So---- with those facts in mind----- how to proceed?

(The Lyme community has had years and years experience of having to confront doctors who are arrogant about what THEY think and not willing to listen to the patient. Some of those patients have been committed to a lifetime of suffering, needlessly. )

Cave, you're right on a lot of things.

In the early weeks of recovery, I could not concentrate on long articles, with lots of technical words (PE was a technical word in those days LOL). So the information on CC was not all that useful to me. In fact, this forum was the most useful, because the members answer questions in laymen words. That's why I'm talking about something very short, very to the point such as: Everyone recovers differently from PEs. Full recovery takes about a year or more. Continued SOB, pains and fatigue are to be expected in the early months. Do not be surprised if one day you feel great and the next you feel as though you should be heading for the ER. That type of comments, with links to this forum, to CC and whatever else is out there.

Where not yet diagnosed patients, the variety of symptoms IS an issue. In my case, they were looking for abdominal issues, because most of my pain was on the right side. They did include the lung in an US, but, I guess, the clots couldn't be seen yet.

Maybe the best approach is to say just that. However, the few things that do matter are the stabbing pain, the SOB, elevated HR, etc. And to point out that not all symptoms can be present at the same time, in the same person, but not to ignore those symptoms. How does that sound?

Where doctors are concerned, I know that my GP HATES being second guessed and will clam up GRRRR. And that seems to be case with a lot of GP. And I'm not in a position to find another GP, as we seriously lack GPs in my area. However, the ER doctors, internists, cardiologists I saw were all open to at least take into consideration my questions. So, I guess, what I'm saying is thread carefully with doctors.

Danielle,

I'm thinking. LOL

Collecting stuff. Also playing Devil's Advocate---- which I've found to be a good way of 'cutting them off at the pass'---- IOW, answering all the unspoken negative comments---- and a great way to continue to learn.

I have the not-so-pleasant experience of dealing with a world-class group of deniers with Lyme. Never thought that would help me here. LOL

Just wondering.

Should this topic be moved to a different thread?