Lupus Forum - Research For Lupus

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Q: Research For Lupus

asked by: Baby_girl on October 2nd, 2003

New User

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

Replies(6)

LadyBrannon

replied on October 2nd, 2003

Active User, very eHealthy

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

Baby_girl

replied on October 2nd, 2003

New User

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.

Baby_girl

replied on October 2nd, 2003

New User

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.

LadyBrannon

replied on October 2nd, 2003

Active User, very eHealthy

Thanks

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

Jenn

replied on October 3rd, 2003

Experienced User

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 Cool

jonesm51280

replied on December 22nd, 2003

New User

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

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