Hello everyone my name is desiree and I am
a student doing research on lupus.
Basically I want to shed some light on
this disease. I know that meny ppl have
lupus but twice as meny don't even know
what it is, so this is where I need your
help. I can only research so meny books
but what better then to get it straight
form the people that are living with it.
So if you decide to reply to me please
tell me your stage that you are at how
your life is living with lupus sympoms and
anything else thay you would like for me
to share. This is one disease that I
would really like to see have a cure.
Thank you for your time and your patience
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Posted: 10-02-03 12:14pm
Can I ask you to give us a bit more
insight into
1) who are you doing this for (university,
government agency, etc.)?
2) from what aspect of lupus are you
researching (rashes, kidneys, lungs,
etc.)?
3) what kind of information do you want?
From flares? From remissions? From day
to day life?
4) how will the information be used?
5) what are your privacy rules?
Thanks,
ladybrannon
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Baby_girl
New User, Becoming EHEALTHy
Joined: 02 Oct 2003 Posts: 3 Location: Toronto
Posted: 10-02-03 16:37pm
Basically it is for my high school report
in health care class. And I would just
like to knkow what is it like to live with
lupus, how are your day to day activities
afected, now that you have been
diagnoised. Any thing that you would like
to tell me that you wouldn't mind me
telling my classmates. Of cours I don't
expect you to give me your real name, and
nothing to personal that you might not
want to tell a stranger you have not
met.
I would like to know about "flare ups", I
have read about it but it's only just
descussed as "flare ups" nothing more it
doesn't tell what are flare ups.
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Baby_girl
New User, Becoming EHEALTHy
Joined: 02 Oct 2003 Posts: 3 Location: Toronto
Posted: 10-02-03 16:41pm
I would also like to learn any and
everything possible. At this time in my
life and the stuff that im am reserching
it making me really want to understand
what causes it and why. I know that there
is no scientific cause but there has to be
something to it. And that's really why I
want to talk to someone living life with
this disease. My intentions are honerable
and I would like to spread the word about
lupus but there is only so much that a
book can tell you. You know what I mean?
Thank you for your time.
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LadyBrannon
Active User, Really EHEALTHy
Joined: 17 Jul 2003 Posts: 506 Location: TX
Thanks Posted: 10-02-03 17:25pm
Fair enough...
Privately e-mail me through ehealth and I
will send you my history with lupus and
how I am dealing with it! I would be more
than happy to help.
Ladybrannon
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Jenn
Experienced User , Rather EHEALTHy
Joined: 09 Sep 2003 Posts: 78 Location: Canada
Hi Posted: 10-03-03 07:26am
Hi,
you can private message me as well. I
will give you my story. I was in high
school when I was diagnosed. Most of my
classmates had know idea what lupus was.
Cheers,
jenn
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jonesm51280
New User, Becoming EHEALTHy
Joined: 22 Dec 2003 Posts: 10 Location: Seattle,WA.
Posted: 12-22-03 13:32pm
You can also e-mail me for my story,i was
also dignosed in high school and noone
new.Talk to you another time.Melissa
