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tbird
05-15-2007, 01:56 PM
I don't want to die young. What is the life span of this disease???
Really stressed :cry:

mnjodette
05-15-2007, 05:41 PM
Tbird, while lupus can have serious implications, most of us will experience lupus as a disease of ups and downs. We'll have times when the disease is really active, and we'll have times when the disease is less active. But it's no longer a disease that's considered generally fatal. Go to the www.lupus.org and check out the "statistics" page. It says:

"While some people do die from lupus, most people with the disease will go on to live a normal life span."

I belong to a local lupus support group in my community. There are people in my support group who have had lupus for 20 or 30 years and some know others who have had lupus even longer. They've lived pretty normal lives, making adjustments to accommodate their symptoms. Please talk to your doctor about how you're feeling. You need reassurance that there is hope for those with lupus.

Jody

Missy
05-15-2007, 10:18 PM
I can't think of anything additional to write - Jody hit the nail on the head. I just wanted you to know I was thinking of you. These are very normal feelings and questions to have - I think we've all wondered this at some point.

tbird
05-18-2007, 08:06 PM
Thanks guys!

I am just a basketcase these days, I can't think straight. I just feel ALONE ya know?! But ya'll are really helping me understnad things a little better. I go to my Rheumy next Wed. Kinda nervous but anxious to really talk to her and find out as much as I can! I may not have Lupus but I feel in my heart that I do... :cry:

Thanks again

magistramarla
05-19-2007, 08:39 PM
Hey Tbird,
I'm twenty years older than you, but I'm going through the same thing right now. I was just tentatively diagnosed last month, but I have to wait until July 13 to see the rheumy. I must live in a bigger city than you, so getting an appointment takes longer. Waiting is no fun, especially with all of the questions and worries that go through your mind. I've become quite the expert on Lupus through the internet and finding this listserve was great. I've learned a lot and have been re-assured just from "lurking" and reading. Let us all know how your appointment goes. I'll really be curious to hear all about it.
Marla

Ruth1980
05-20-2007, 07:48 AM
Hey Tbird,

I know how stressfull things are for you! I am 26 and have only been officially diagnosed for a year (it took almost 8 years to get diagnosed). I wondered the exact same thing...nobody wants to die early. I talked to my dr about all of my worries and it was great because now he explains things to me completely differently. Yes I have had to make some major life adjustments, but I am still bale to fully function and I still enjoy life, sure I wish certain things weren't a part of it, but I am able see all of the good that I enjoy too. Good Luck! keep us posted on how all of your doctors appointments turn out.

tbird
05-20-2007, 09:13 AM
Thank you all, I will definitely let you know about my dr appt. I am so glad after all these years to finally be pointed in some direction as to what has been going on with me for the past few years. It's a relief really but still scary, ya know?

I just want to be ok...We all do..

Take care and let me know how ya'll are doing

Much Love
:D
ASH