Finding Information About PE

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Finding Information About PE

Postby twinqtsdad » Sun Apr 24, 2005 09:36 am

I would be interested in knowing how easy it was for you to find information about PE.
It has been my experience for over Ten Years that it is not that easy to find information on PE, or full blown Eclampsia. Or HELP.
The Hospital that my wife had her PE, or rather, IMHO, had full blown Eclampsia still does not list PE in there search section. Check with your Hospital or Doctors website. Do they list it, or at least a link to here, the foundation? I would like to suggest that each of the foundation's 2500 + contact the hospital and doctor of there choice and encourage them to post some information about PE and HELP.
I am not sure about now, but APEC used to give out posters and leaflets to its members to give to there doctors office. Wadda Ya Think?
Yours Twolly, Twinqtsdad
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Re : Finding Information About PE

Postby helenw » Sun Apr 24, 2005 11:48 am

Hi

Well it is easier nowadays. But I think that is very recent. When I first had PE 10 years ago there was next to nothing. When I got it the second time and again found nothing on the net I created my own website about it all! I think the internet has helped the cause a great deal. But thats just for us people, the docs should have had all the info they needed all along. Wether they have used it r not is another matter.
And ask the doc? *, my GP during my first pregancy hadn't even heard of HELLP! I had to give him some leaflets from APEC. ([url]www.apec.org.uk[/url]) Speaking of which, yes they did do the poster thing. I was a local contact for them in the UK for a while till they changed the way things worked. I remember at one point we even put posters on the back of toilet/washroom doors in the pre-natal wing encouraging ladies to have their urine checked for protien. Captive audience hey?!

Helen [:)]

[url]www.pre-eclampsia.co.uk[/url]
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Re : Finding Information About PE

Postby akemt » Tue Apr 26, 2005 09:23 am

You know, that is a big part of why this forum exhists...not that I had any part in starting it! But I cannot tell you what it meant to me to find the PF when I searched the web after my first diagnosis. I gained a wealth of information and support that gave me the courage and information I needed to have a second child and be sure I was getting propper medical care in the process. That is also why I volunteer my time here - to lend support and try to pass on the things I've learned about this disease to others. I am a stay-at-home mom to two little ones who lives on an island in Alaska, so this has been my most influential opportunity to do what I can to move "the work" along. The PF forums have grown leaps and bounds since I've found them and the Preeclampsia Foundation is working its way into (already is, I'd say) a position of great authority and recognition nationally and internationally in a very organized and deliberate way.

For me though, I educate others I come into contact with when I can, including my doctors on the occasion that we disagree, and I even daydream of becoming a perinatologist myself someday when the kids are raised and we're independantly wealthy... [;)]

Basically what I'm trying to say is that we all do what we can in our own situations and we truly do apreciate what others do as well, knowing we all have different capabilities and constraints.

I hope that you are able to make a great impact for good in your efforts and I appreciate the ideas, suggestions, and motivation.

Catherine (24), Moderator
DH Britton (28)
Emma Margaret (03/02/03) 37 wks PIH & Oligo
Lara Julianne (07/31/04) 38 wks PIH & gallbladder fun
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Re : Finding Information About PE

Postby laura » Tue Apr 26, 2005 12:59 am

I think this is such a timely post, because we have brochures in hand ready ready to send to the state coordinators for distribution! I am so excited about this- and I love that we now have organization in place to coordinate all of our efforts together so we don't try to recreate the wheel. I'd say, if 'spreading the word' is something that you're interested in, get involved in your local branch of the PF and help us get these brochures out there! I snuck a peek and I think they're wonderful.

Although I really like the poster on the bathroom door idea, lol!

Laura
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AK Area Coordinator

Alicia (severe PE) 5/98 ~ Camille (htn, oligo) 4/03
http://www.babiesonline.com/babies/c/camilleandallie/
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