The UNC site says if you want more information about the UNC Blood Clot Outreach Program and Clot Connect project you can contact them and it gives you detailed contact information. Might be a good place to start- the actual contact person for the program.

Thank you for that information, which I had seen, btw.

But I thought that the people actually involved in it (I know that's not you, rmb) might be able to shed some light on it---- I mean people who are actually on this forum like RetNav (who IS a CC advocate) and others who have actually seen the materials in their anti-coag clinic, hospital etc.

No, it's obvious you were hinting at RetiredNavy to respond; that was evident.

If I wanted to find out any information on anything, and there was detailed contact information provided, I'd go that route.

For instance, If I wanted to know when my garbage is going to be picked up, I'd probably call my city garbage collection phone number listed on their website, not dismiss that contact information, and instead go ask my neighbor down the block.

The shortest distance between point A and B is always going to be straight line. But hey, that's just me.

Material had been distributed at ASH conferences and ACForum originally. It is availabe to download online which is where CC's partners get their copies for their patients. Likewise, the Naval Hospitals in CT and RI along with the several local civilian hospitals locally to me also do the same.

Having your healthcare provider contact Beth Waldron at CC if the are interested in obtaining hard copies in lieu of an electronic copy.

Keep in mind, CC was created to support the local patient community in NC. Several patient seminars are held in that area of NC. Dr. Moll feels that the information is needed national even in lieu of NBCA. Dr. Moll is the pioneer when it comes to helping patients beyond the walls of UNC. He started reaching out through www.fvleiden.org which is a website started back in 1998 by a friend of mine, Deb Smith in CA. No other VTE researcher had taken on patient advocacy at the time.

Thanks JD for asking though!

Um, I'm thinking maybe because the majority of new patients were once unsuspecting members of the 'general public'?

Links for patient resources:

http://www.clotconnect.org/healthcare-professionals/patient-handouts

"What do they do to reach the general public?" Well, based on a survey NBCA did a few years ago, only 21% of member of the general public knew what a DVT/PE was.

http://www.stoptheclot.org/News/article249.htm

If you sit and look at the big picture, everyone knows someone who has suffered a blood clot. But at the same time, how many VTE survivors have a friend or even a family member who doesn't realize how lucky that survivor really was or understand the mixed emotions you as a patient may be going through. Most people see survivors as having been hospitalized and now doing better (little know what could have happened as a result of a PE). As a survivor, you know what to look for, but as ShilosMommy eludes to, people of the general public don't. By reaching out to the public and trying to educate them about the signs, symptoms and risk of a VTE, you may prevent that person from being a death statistics.

R/Tom

Thanks for the suggestions, retnav.

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?

I thought I'd seen that there was a charge, but maybe that was from the CDC.

I'm asking retnav because I know he'll know the answer. And asking questions of our patient advocate is the best way I know.

He also said:
"By reaching out to the public and trying to educate them about the signs, symptoms and risk of a VTE, you may prevent that person from being a death statistics."

Exactly! That was something I brought up a couple of times in other threads (a way 'we' could reach the gen pop) but which went over like the proverbial lead balloon. LOL

" As a survivor, you know what to look for, but as ShilosMommy eludes to, people of the general public don't."

I seem to remember that I also said that (about the gen pop). But thanks to SM for reinforcing that.

I think it's VERY important that the word gets out to the gen pop and not just to those few that will attend a conference or a webinar. Those people already know most of the truth and just repeat it to themselves.

" Dr. Moll is the pioneer when it comes to helping patients beyond the walls of UNC".

" He started reaching out through www.fvleiden.org"

This is repeating what I said previously----- who in the gen pop would possibly look up pulmonary embolism or VTE let alone FVLEIDEN on the Internet????

Huh? Yeah a bit of disbelief there, not too hidden. (grin)

We need something that will be 'advertised' as well and as often as West Nile Virus----- which I'm pretty sure doesn't kill as many people in the U.S. as PE's do. (Of course, no vaccine for PEs so the university researchers probably won't 'research' as vigorously!)

As with any illness/condition, sadly, no one cares about it until it affects home, whether that be the individual, family member or friend. I'm not sure if you have every left California, but this is a pretty big country. Reaching out to the general public has different levels (State, Regional, National, International).

Here is another statistic of interest drawn from the 2005 study by Dr. John Heit that shows it isn't just the general public that needs to learn about VTE:

"There are almost 300,000 fatal VTE events each year (296,370), and only seven percent of those who died were diagnosed and treated."

Though I should bring up (and have mentioned before in previous threads) that the reporting methods used in that study were flawed and not 100% accurate (i.e., some occurences of DVT were reported twice). Whether or not the numbers of deaths is 100% accurate, we don't know, the CDC and U.S. Surgeon General estimates 100,000 people per year die due to VTE as compared to the 296,370 reported in the Heit Study. That issue is already discussed in another thread on this forum regarding DVT surveillance so I won't revisit that here. I realization that regardless of whether the number was 296K or 100K, for only 7% of those patients in that particular study to even have been diagnosed and treated as having a blood clot is disturbing and something that bothers me.

Back in 2004, the Coalition to Prevent DVT was established and a National DVT Awareness Month was created. The purpose of the Coalition was to raise awareness to the general public. Initially, Lainie Kazan was their first spokesperson, shortly followed by Melanie Bloom, wife of NBC News Coorespondent David Bloom who loss his life to a PE while embedded with the military during the conflict in Iraq. Melanie did a good job, and I often shared the podium with her at several events up at Harvard. Her talking about David, me talking about the need for patient advocacy and public awareness. The Coalition spent a lot of money during the next four years, having events around the country, and being on news shows like Good Morning America, trying to break the world kick-line record in Washington DC, and such. They created the initial DVT Awareness Pin. In the following years, they awareness intiative consisted of decorating a white long tube sock to show awareness. But, the Coalition did not have an active Patient Advocacy Voice (it was run by doctors working for Sanofi-Aventis; makers of Lovenox). Not all healthcare professionals jumped on board the Coalitions bandwagon, in fact many did not like the organization feeling they were too deep in Sanofi's pockets and their only agenda was to promote Lovenox.

Coincidentally, when Lovenox's license expired and generic Lovenox was passed by the FDA, money for the Coalition started to fade. Last year I heard barely a whimper from their events and "public awareness" initiatives. So, here our patient community has a awareness month passed by Congress and I know I haven't heard a word from anyone in the healthcare or pharmaceutical community regarding any PR released or events taking place (something which I have already voice to several organization, the CDC and key members in the pharmaceutical community.

Your hyperfocus on what has Dr. Moll done specifically is not as relevant as what has anyone done.

Where I do agree with you is "We need something that will be 'advertised' as well and as often as West Nile Virus----- which I'm pretty sure doesn't kill as many people in the U.S. as PE's do." DVT Awareness Month is faultering and though I could point fingers at who to blame, I would rather see these organizations brush off the dust and resurrect the campaign and turn it into what it should have been all the time now that founding organization is in hibernation either temporary or permanently.

I always hoped that our patient community would receive the same height of public awareness as Breast Cancer Awareness Month, which in my opinion is the campaign to emuluate in success. It didn't happen during my tenure regretably but it wasn't due to lack of trying.

"Your hyperfocus on what has Dr. Moll done specifically is not as relevant as what has anyone done. "

I 'hyperfocus' on almost everything, in case you haven't already noticed. (grin) And I always---- repeat 'always'----- go beyond the PR releases and conferences and what is released to the public. And beyond what I'm 'told'.

I don't see where anyone, at the grass roots level, has done much of anything---- in regards to getting the word out--- past their friends and families and these forums.

Sure, that's a start. But, as you said earlier (#6) no matter how supportive a family might be when we're out of the hospital and still breathing---- "Whew! THAT was a close call. Now can we please get on with our lives?"

Lwelch has posted here and has a Hub page that's pretty good. But someone has to know to google PE, VTE etc to come up with that, which makes my point.

Patient advocates would seem to be best at facilitating the exposure that the average person (non PE knowledgeable) might receive. I do thank you for the recounting of how you helped celebrities with advocacy. (More about Poster Children later.)

"There are almost 300,000 fatal VTE events each year (296,370), and only seven percent of those who died were diagnosed and treated."

Yes, I was almost one of those 300,000 fatalities. But should I mention that it was because of a doctor that I didn't get dx'ed? I know you think I diss doctors too much but that's a fact and it's one I hear reported from others here on the forum--- over and over.

Gotta go------ off to have some fun today regardless of being short of breath, too weak to walk more than block, pain in my back and other loverly things. But hey, who's keeping track? LOL

Cavey,

Understand your doubts regarding doctors. Back in 1992 when I had my first DVT and PE, I went a week being told it was a torn or pulled muscle as a result of a mountain bike race and told to take Motrin. In the doctors defense, they did order a D-dimer test on me after my third visit when the leg didn't get any better (which came back negative). It wasn't until my leg ballooned in size that they even considered a venogram. Then when hospitalized, they performed a lung scan because my resting heart rate was elevated. The Naval Hospital had the Navy Chaplain came in and ask me if I ever thought of where I would like to be buried in the event something happened to me. They were prepared for the worse. After my 2nd DVT I told the doctors I thought it was a blood clot but in their eyes odds were against that. I was right.

I didn't help Melanie we just happend to share the same podium. Melanie was well paid by Sanofi to represent the Coalition. Regardless she was a elegant speaker and any survivor could easily identify with the story about her late husband and what he went through. There is no doubt in my mind you would find a way to create a Cavey Journal entry for yet something else you have little knowledge of other then cut n past - "More about Poster Children later"
(grin).

As far as grass roots movement, there is only so much you can do. Granted NBCA did not do a lot out in the west coast mostly because they never identified a hospital who was willing to assist with having a patient seminar (which didn't cost the hospital or patient a penny). The logistics involved and coordination efforts just couldn't find someone willing to volunteer. Keep in mind that even though NBCA had a grant to pay for seminars, the cost of travel and lodging to officers, board members, and even the doctors came out of pocket with no reimbursement. As a grassroots organization, there is only so much you can pay out of pocket. This is why it was important to find a healthcare facility which could provide that type of support. This is the cost of a grassroot organization. Beyond that, you can thank NBCA for the medicare decision on Home INR machines and the medicare ruling regarding hospital acquired DVT since they lobbied to make sure Medicare approved those measures for the benefit of patients and future patients. Would I like to see them doing member; yes. But I also understand the cost of trying to run such an organization having been there. Keep in mind, prior to 2003, there were no such organizations to support the VTE community. NBCA is/was made up entirely of DVT/PE survivors who got fed up with the lack of awareness.

I've seen the various postings and back and forth in the Lyme community throughout the web and know enough about you to understand why you are suspect of modern medicine. I have my own opinions too about our own VTE community in regards some of the healthcare organizations but it is in a different way. It's not that I doubt their message, I just doubt their motivations. The FDA investigated one of them a few years ago because of their allegiance to SA when it came to the whole biosimiliar debate. So unlike you, my concern is not whether long term antibiotic treatment is necessarily or if chronic lyme disease exists or not, my concern is are some doctors too deep in the pockets of major pharmaceutical companies that they are blind to other alternatives.

If you are not happy with what a organization is doing, the best thing to do is get involved with them through volunteering. That way you have a voice. I highly recommend it for you.

Regarding the general public and the lack of awareness regarding PE, I'm a perfect example. In my case, my dad died of a PE in 1967. However, he had several risk factors and, in my head, having a PE was synonymous with instant death: he was hospitalized at the time and literally collapsed in between two nurses and was instantly gone. In my mind, PE survival wasn't even a concept. Furthermore, in my mind, PEs only happened to very sick people.

Again, I'm the perfect example that all my assumptions were wrong: not only did I not die from the massive, bilateral PEs, I had absolutely no known risk factor and was in relatively good health for a 56 year old. It took finding this forum for me to realise not only how lucky I was to have survived: I already knew that as I was told, several times, that I could die while in the ER, but also that young people PEs with no other health issues.

If I had known the symptoms (even when I entered my symptoms in the browser, because, early on, SOB wasn't a symptom, I was only getting results for gall bladder issues or heart attack, and that one was on the day before I finally headed for the hospital with an 81% O2 saturation!), I may have gone to the hospital a week earlier and avoided the extent of PEs that I ended up with.

RetiredNavy said

"If you are not happy with what an organization is doing, the best thing to do is get involved with them through volunteering. That way you have a voice. I highly recommend it for you."

I say "touch". Hit the nail right on the head. (grin)

@Danielle,

A 'good' example, that's for sure. Thanks for taking the time to post it here where the lack of knowledge for the 'average' person can mean a death sentence.

Do you have any thoughts about how the public can become more aware? Getting some ideas from other members would be helpful. 'Ideas', of course means something other than a seminar at a hospital, a web site, a 'coalition', famous people or involving the CDC, NIH and the like.

Danielle, maybe I'm just wishful thinking but surely people who have had the experience that most of us have here can do something at the 'grass roots' level. (And I mean 'grassroots' as from the 'common people'.)

Mentioned before, by me, but not considered by others---- flyers on bulletin boards, entries in church newspapers or local newspapers, senior apartments etc. It's been done before and it does have an effect.

It's not as glitzy as a convention or a webinar but it's something. Those actions don't take a lot of money or effort and get to the 'common folk'. (grin)

Thank you Cave :)

My experience on getting the word out has been to walk the talk.

Flyers would be good. At my doctor's office, for example, there are flyers on all kinds of "common" conditions such as heart disease, the risks of unprotected sex, the risks of travelling and not having the proper vaccines, diabetes and others. However, there is NO information about blood clots and the associated risks. Same goes with the information available at the pharmacy. Yet, as we all know, blood clots can kill us.

Flyers are definitely an option, if not the best option. But I also think that we can spread the news by telling as many people as we can. And that's what I've been doing: talking about my experience to just about everyone I know. And not just about how ill I was, but also about the symptoms and the risks. If I'd known about the symptoms, I might have been diagnosed earlier.

Another thing we need to know is to talk to doctors about those symptoms. I was in the ER 3 times before I was diagnosed, with very confusing symptoms. If they'd suspected a PE earlier, again, it may have made a difference.

Seminars are also a good idea, but they tend to not reach the general public. And, in my case, as Retired Navy mentionned, there is the international factor: not only am I in Canada, I'm also in a french province. I find that the information in french is pretty much unavailable. Also, it tends to be information from France, where the system and, lets be honest, the language is different than it is here.

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

Also, I am going to look around to see if there is a "live" support organization in my area. That is one great way to get the word out: I volunteer with a support organization for the bereaved here and we are doing tons to get the word out on how to support the berieved, especially kids and teenagers.

And, dero, as we are in the same area, and speak the same language, we could work together on this on our end.

RetNav said in an earlier post on this thread:
"Reaching out to the general public has different levels (State, Regional, National, International)."

I had "my neighborhood' more in mind. Maybe even "my city" (grin)