Anyone with personal experience or info related to lupus?

My mother was just recently diagnosed with systemic lupus erythmatous (SLE) after years of going through a variety of symptoms and being told she had every other ailment possible. Because she's been sick for about 4 years, the doctors have told her that she will have a harder time with getting the disorder into check. She's only 40 years old, and is just had a really hard time these last couple years. She's a hospice nurse and told me today that lupus is a hospice diagnosis which would make it terminal? Is this true? I'm a brand new nurse and have been trying to find information about it. I was just wondering if there is anyone out there who has it? If so how do you manage it? Have you been told that it is terminal? Obviously I'm really concerned about my mother, and knowing a little but not everything really makes it worse. I would appreciate any advice. Thanks in advance.

Lupus is not terminal !!! Where did you get such information ? Please educate yourself ASAP ! I have Lupus - SLE and was diagnosed about 10 years ago after being told I had a whole myriad of things and /or that it was in my head. There is no cure but there are many treatments. And any good specialist, usually a rheumatologist, will treat the symptoms. There will be plenty of specialists to be seen according to what the lupus is up to. I see a nephrologist, urologist, hematologist, ophthalmologist, dermatologist, rheumatologist etc......People to not keel over and die from Lupus. About 30-40 years ago the outlook was about 10 years without ever going into remission, but today people live as long as healthy people as long as they take care of themselves. Stay in tune to their body's, do as their doctors say, know their limits and do not sit around and feel sorry for themselves. After working and volunteering as an EMT I had to step back but I did not sit around and wait to die. Your mom and you should consider joining a support group. Webmd has one which was very helpful early on for me. Also log onto the lupus foundation site. I should mention I am 43 and was diagnosed at 33 - but it was there for many years prior.

well...errr..i haven't really had direct experience with lupus..but my sister in law has it, and they have a family history of SLE.
I'm a medical student, btw!! and have seen quite a few cases at the hospital.
when my brother told me about his wife, i started reading on the topic.
SLE affects people in different ways. it can vary from being severe to very mild. it is said that no two poeple have the same symtoms of SLE. Each patient have their own mix of signs and symptoms.
I've attended a conference of SLE, but didn't get a seat and was puched out of the lecture hall. Anyhow, the impression that i had got from the conference is that it is manageable. it is important to have regular checkups, though. and to make sure that the kidneys are not affected, by measuring proteins (albumin) in the urine.

There are some natural health supplements that might reduce some of the symptoms. for instance, since SLE is an autoimmune disease, some of its symptoms have to do with inflammation, therefore, taking supplements that reduce inflammation such as primrose oil, omega oils and salmon fish oil may help.

Also, since it is an autoimmune disorder, in which the the immune system is "overactive" taking supplements that reduce immune function may also show some benefit, like selenium (eat brazil nut!!)
Also, I'd read something about the hormone DHEA and it being very helpful in reducing many symptoms, but don't remember its exact function!!!

My sister in law started taking some of those supplements two months ago, and her rashes and alopecia have reduced.
Hope your mum feels better!!