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Join date : 2007-12-09
Location : Ottawa, Ontario, Canada.

PostSubject: Newsletter...   Sat Mar 01, 2008 10:37 pm

Since the beginings of "Life After DVT" (december 2007) we have learned a lot about this silent killer, sometimes even more then we wish. Deep Vein Thrombosis is a disease that most of the popullation is totally unaware of, but still the mortality rate rises.
If you are not directly hit by DVT or do not know of a relative, or a close friend that has DVT, you do not know anything about it. It's not your fault, that is how it is, until you meet this evil face to face, you do not hear about it.

This is one of the numorous reasons why "Life After DVT" has been put together as a forum, so that people get aquainted with the facts, raise the public awareness, another reason is that when you are diagnosed with DVT/PE..., it is an emotionnal rollercoaster and there is so much information given to you, by your doctor in such a short time, that you can not fully comprehend it all. We try to gather as much litterature (links to various sites/forum)that does explain the whys, whats and hows of this new lifestyle. The way we have found to be more credible, is to provide more then one link to a certain topic
ie. "What is Deep Vein Thrombosis" has 16 different links that all say the same thing in different words from various studies and from various doctors.

Over the last months,we have discoved that Canada, does not have any official DVT awareness organisation (such as NATF, NATT, ClotCare and PreventDVT,just to name a few in the USA), which explains why the population is totally unaware of DVT, PE, Factor V Leiden, Protein C and S deficiency, May-Thurners Syndrom, who can get afflicted, how they contract these...
Which is alarming.

*According to the American Heart Association, up to two million Americans are affected annually by deep vein thrombosis. Of those who develop pulmonary embolism, up to 300,000 will die each year. That is, more Americans die annually from DVT/PE than from breast cancer and AIDS combined, which account for about 55,000 deaths annually. Yet, according to a national survey sponsored by the American Public Health Association, 74% of Americans have little or no awareness of DVT.
*Quoted from the ClotCare forum.

After you realise the severity of DVT and see the stats you wonder...
"How can we stay so ignorant to this disease?"


We are presently trying to find the Canadian statistics related to DVT, we are certain that they won't differ much from the Americains statistics.
We have been making contacts with various associations and people are astonished at the fact that nothing presently exists
in Canada.


In a near futur, you will see some changes/additons in the actuall structure of the forum. All of the informations that has been gathered for the purpose of helping the newly diagnosed DVT outpatients, will remain and grow as we find more information.
That is and will always be the main reason that this forum exists.

It is time somebody did something about the lack of public awareness, since we have started with this forum, why not us???

Be well.

The administrative team of "Life After DVT".
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dero
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Age : 57
Location : Near Ottawa, Ontario Canada.

PostSubject: Re: Newsletter...   Sun May 11, 2008 5:55 pm

Newsletter #2

Since the opening of the forum back in december 07 we presently have 47 registered members, the forum receives well over 100 hits each day, so many are reading the litterature here.
After inviting many from the medical comunity to visit the forum (to see if we were on the right path), the feedback has been very positive from these professionals.

As it has been previouly stated in the last message, some moves have been made to see if a Canadian organisation could start existing to raise the public awareness on DVT, contacts have been made, meetings have taken place. We have received much help from existing American associations who wish nothing more then seing such an entity take off.
Rome was not built overnight, a proper foundation has to be layed out to have it properly functioning.
As soon as anything officially takes off, you will be informed...

Talking of the forum, as usuall we are all open to suggestions, things that should be changed, added or gotten rid off.
Hopefully members will start to comunicate with each other, we do have a chatroom that was put together in hope that we could have guess speakers from the medical comunity or simply members comparing notes on what they have found on the internet. As all the aquiered info on this forum comes from the internet, much never made it here due to the lack of factual litterature and lots is plainly wrong. ie. text that say that once you are taking anticoagulants, you should stop eating any vegetables that have any vitamine K in it. We all know that that is false,one reason why it's not here.

To those who are just starting their new lives after being diagnosed with DVT, PE and/or any other DVT genetics related diseases, don't be shy, ask your questions here and if we don't know the answers, we will do our best to find the answers...

DVT is a hard rollercoaster ride, physically and psycologically,but we are all SURVIVORS, many have contracted DVT and are not with us anymore.
It may sound maccabre but it is a reality.
We walk and are alive

Be well...

The admin. team of "Life After DVT".
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dero
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Join date : 2007-12-09
Age : 57
Location : Near Ottawa, Ontario Canada.

PostSubject: Re: Newsletter...   Sun May 25, 2008 3:23 pm

From going around on various DVT forums that I am a member of, it seems that there is a lack of DVT specific chatroom, somewhere that members can have a live discussion, conversation about various topics such as, pregnancy during or after DVT, Vitamin K, INR, just any topics...
It is a very frustating disease, so many questions when you are diagnosed, so many questions about what I can and can not do because I have DVT, so on and so forth, many friends that I have met over the last year have become very knowledgable because they have lived their lives with DVT or PE or... Maybe it's time we get together and talk, with newly diagnosed patients, old patients, lifers...
Here on Life After DVT, we have a chatroom which I think can be very usefull for that purpose...
What do you think?
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Gismo

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Age : 46
Location : Johannesburg, South Africa

PostSubject: Re: Newsletter...   Wed Jul 23, 2008 12:40 pm

I say 2 thumbs up, good idea! Smile
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dero
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PostSubject: Re: Newsletter...   Mon Feb 15, 2010 2:31 pm

Only one person wants to talk?
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theangrydvtguy



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Join date : 2012-10-18

PostSubject: Re: Newsletter...   Tue Jan 01, 2013 5:23 am

The truth is I never cared until I got sick Dero. I think the chat room would be a great idea. The doctors don't even explain things to you in the hospital. I had to pry information out of them. This site will get better and bigger in the future.
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dero
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Location : Near Ottawa, Ontario Canada.

PostSubject: Re: Newsletter...   Thu Jan 03, 2013 12:26 am

Pssst, Angry this is an olllllllllld thread, 3 year old What a Face old. The chatroom was added two years ago. study
You access it on the home page, in the bottom.
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