Voiced over by D.S.: She also says it is a chronic disease that can go into remission. But there is no cure.

K.M.: I didn't know what lupus was...at all. I mean when I found out she had lupus I was too afraid to learn about it because *sigh* you know, you don't want to know about how bad it could possibly be. I mean, I'm not dumb....I'm a [smart] person.... But that was immediately what I thought of. Oh! There's a cure for this....there has to be a cure...It's not Leukemia.....It's not that bad..... But, there is no cure for this. When Heather was in the hospital, she looked beautiful.... because of this rash. And it's so deceiving, you know. It's just a sign of this war that's going on inside your body.

Voice over by D.S....[also] pictures of Heather & Kellie...Her sister's *war* included dehydration, kidney failure, a respiratory breakdown, liver & bone marrow malfunctions. Details that are too painful for her to remember about a baby sister she says who was never even afraid of the dark.

Cut back to Kellie...

K.M.: The first 5 to 7 doctors didn't get it. They said, "We don't know what it is...We'll just treat her for her pain." And that's all they treated her for.

D.S.: At this point it was acute pain

K.M.: Yes, Acute pain. Acute abdominal pain & muscle pain throughout her body. Mostly abdominal pain was the worst for her. I mean they thought it might have been an infectious disease....like tropical something or other. They didn't think to look to an autoimmune disease. Until very, very late in the game....Too late in the game.

D.S.: What did your sister say to you when she got the dx?

K.M.: I came in the room & she said, I have lupus. I said, "That's OK!!! That's OK!! That's GREAT! I mean, we know what it is...I mean, we can deal with this!" (She said all of this smiling like she was happy at the time. Then became serious once again.) But there is no cure for autoimmune diseases. There are only ways to make you feel better.

D.S.: And when did the two of you confront that?

K.M.: We actually didn't get to. Because she became sick enough that we couldn't actually talk to her. She was sedated. But we never....we didn't have a chance to deal with it as a...uh...a..*sigh*...you know how people deal with an illness? and, and.. fight an illness? It really was...it happened so fast to us that it wasn't even....we weren't even able to fight. And that's why I'm here. Because I want people to be able to figure out what it is that is wrong with them. And so many women, they just need to know that this is a womans problem. A health issue that they need to be aware of. No one should ever, ever have to go through this. (shaking her head)...ever.

D.S.: Tomorrow Kellie Martin will be here again to talk about Life after her sister's death & how returning to ER Helped in the healing process.

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INTERVIEW WITH DR. TIM JOHNSON

Charlie Gibson: We just heard actress, Kellie Martin talking about her sister's sudden & agonizing death from Lupus. This summer we also talked, as you may recall, to Oakland A's outfielder, Tim Raines about his battle with the disease. And so to help us better understand this illness our Medical Editor, Dr. Tim Johnson, is here with us this morning. Tim, I must admit I had never heard of lupus until just a few years ago. When the first family's dog, the Bush's family dog, Millie, was dx'd with lupus. But, obviuosly this is very prevelant, much more so than I ever realized in humans. [As far as] typical symptoms, Diane mentioned some, but you should run through them again.

Dr. Tim Johnson: Well, the truth is that this autoimmune disease can affect almost any organ or system in the body. So, the potential of symptoms is almost endless. But we've got some of the more common ones that will show up:

Chart...COMMON SYMPTOMS OF LUPUS

• Fever Fatigue/malaise
• Appetite loss/weight loss
• Butterfly rash
• Nose/mouth sores

Voice over by T.J. The first three symptoms are common with many other diseases. So, it is obvious why it often isn't diagnosed in the early stages...The Butterfly rash is much more distinctive. And then there can be sores elswhere on the body. The truth is ANY body system in the body can be affected

Chart Continues...

• Eye Problems
• Joint Pain
• Kidney Problems
• Painful Breathing
• (Seizures)

Voice over by T.J. Joint pain is often misdx'd as arthritis. Kidney problems can be quite severe. Problems with the lungs, heart, nervous system changes in the mental accuity, etc. It really is tough to dx in the early stages. Because it mimics so many other potential problems.

C.G.: I was gonna say....Those are really very general symptoms with the exception of that rash sounds very specific.

T.J.: Fortunately, there are, now, some blood tests which will help to diagnose it in combination with symptoms. The point is, of course, that the earlier it can be dx'd the more effectively it can usually be treated. Now, sometimes those rare fulminate courses that can lead to death within weeks or months probably couldn't be treated even with an early dx. But the vast majority of people with lupus will have a pretty normal lifespan. 85% survive at least 10 years. So, It's treatable even though it isn't curable.

C.G.: I was gonna say, Tim Raines said to me, he was on a very agressive treatment with steroids & anti inflammatories. Those who die from the disease...They simply don't respond to those drugs?

T.J.: That's basically it. Steroids are the main stay of treatment. Other drugs can be tried in place of, or in addition to, steroids. And when people succumb to this disease it's because these treatments don't work effectively enough. But, again, I stress that the majority of people with this disease will have a very long and fairly normal life.

C.G.: Genetic link?

T.J.: Yes, it tends to run in families. If a mother has it her daughters are at risk, her sons are at greater risk. But, it can occur in anyone for the first time in a family.

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