"Real life" experiences listed with the symptoms

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Expand view Topic review: "Real life" experiences listed with the symptoms

Re : "Real life" experiences listed with the symptoms

Post by ileana » Tue Apr 13, 2004 06:41 am

Sharel and all,

These are all wonderful ideas, but we need help to get them to life.

For the next 2 months we will rehost the web server to another location and launch a new updateable registration form.

After that we can start redesigning the web site and adding all the nice content that you are suggesting.
We are also planning to send a quarterly electronic newsletter.

Unfortunately, as easy as it looks to just write a simple web page, we need someone to take responsibility that all the steps are there to keep the web site professional. We need to make sure that
- The text is clear, gramatically correct and readable
- The web page conforms to the PF web standards and is well integrated in the existing web site
- The content is approved by the PF
- The content is endorsed by the Medical Board.

If one or more of you are willing to participate in this project and even manage the new web site creation, please let us know.

I will assist you with any technical problem.

Email me directly (ibalcu@dulcian.com) or Anne (anne@preeclampsia.org) if you have the time and are willing to help.

Thank you,


Ileana
IT Coordinator
Preeclampsia Foundation

Mother of Angel - stillborn on Feb 17, 2003 (24wGA, 410g)

Re : "Real life" experiences listed with the symptoms

Post by taras mom » Sat Apr 10, 2004 02:53 am

That's a great idea, Sharel! Sometimes a subjective description makes a lot more sense than a bunch of numbers.

Carol (38)
DH Bill (40)
Tara Mairichi
12/7-12/9, 2002
The Mightiest Little Angel

Re : "Real life" experiences listed with the symptoms

Post by gossamer » Fri Apr 09, 2004 09:40 am

I agree, I think that is an awesome idea. Even on some of these threads I have seen several definitions of what the right side pain felt like, it would be nice to have personal experiences in one place. I see a book in the making. To be sold with all proceeds benefitting PF.
Gossamer

"Before you were conceived, I wanted you. Before you were born, I loved you. Before you were a minute old, I would have died for you.
This is the miracle of life. " -Maureen Hawkins
[url=http://f1.pg.photos.yahoo.com/ph/zonker29/album?.dir=/Baby+Casteel&.src=ph&store=&prodid=&.done=http%3a//f1.pg.photos.yahoo.com/ph/zonker29/lst%3f.dir=/%26.src=ph%26.done=http%253a//f1.pg.photos.yahoo.com/ph/zonker29/vwp%253f.dir=/Baby%252bCasteel%2526.dnm=22%252bweek%252bUltrasound.jpg%2526.src=ph%26.view=t]Mary Rose[/url]

"Real life" experiences listed with the symptoms

Post by angelical » Fri Apr 09, 2004 08:45 am

I was thinking about something the other day... It is one thing for us to have on the site, the "signs and symptoms of preeclampsia", but I would bet that that begs the question of many preeclamptic women "What kind of headache do they mean?" or "What's the swelling like?"

Well, if they are regular readers on the forum, then they might catch descriptions from us pree vets about how we experienced these things. But if they are casual visitors of the site, they might miss important info like that.

So, how would it be to have the signs & symptoms page show examples... something like this:


Sudden Weight Gain

A gain of more than 2 pounds in a week or 6 pounds in a month could be cause for concern

"I gained 9 pounds of fluid in 1 week. Luckily my OB was doing weekly visits --even at 26 weeks-- so this increase was caught." --Sharel from PA.

"I gained 10 lbs in about a week & a half. I knew it wasn't just from that visit to the dairy bar!" -- Jane Doe, CA


What I mean is, some real life "testimonies" might make the symptoms more real... give them something to think about. The Headache would be another good one to give examples of what some of us experienced.

Whatdaya think?

sharel

------------------------
Sharel O'Connell
Local coordinator for Pittsburgh area
'Parents of Preemies' co-moderator
Survivor of Preeclampsia, HELLP Syndome, & preemie parenting
Future adoptive mom

Aaron (28 weeker, 5/2/02)
Kevin - DH

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