Living with Lupus

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Pre-op nurse Lenaki Alexander finds it easy to empathize with her patients and their health struggles. For two years she tried to convince her doctors that she was sick.

I would tell the doctor I'm tired, I have no energy, I have these sores that are coming up that are draining, or I would have hair loss, I had this butterfly rash…and they would run blood tests and nothing was coming back specific.

It turns out Lenaki had Lupus, an auto-immune disorder that affects over a quarter of a million people in the United States.

The pain was incredible. I mean it was unbelievable. I was…I would be doubled over in pain from my abdomen—from the lupus.

It's like your body is allergic to itself. Now, what that means is your normal tissue is being attacked by your normal immune system.

Lupus is difficult to diagnose because it can develop gradually over many years and attack any organ in the body, including the skin. It took five hospitalizations and a full-blown attack – called a flare - before Lenaki was finally diagnosed.

And when you have a flare it's difficult. You hurt, but you don't look bad, and that's the frustration with the disease and for me, it cost me my marriage. And I'm, I'm not the only person this happens to – people with auto-immune diseases…this is a casuality of having the disease.

Left untreated, the havoc that Lupus gives rise to can be life-threatening.

Sometimes they come on very fulminately, all at once, and you have a rapid decline. You know, bad joint pain everywhere, your heart's inflamed, your lung's inflamed, your kidney's are inflamed…and those people really don't do very well. If you can make a diagnosis at your first presentation to the doctor, you're usually very sick.

Interestingly, 90 percent of those with the condition are female—the affliction being the most debilitating during childbearing years.

We know that women with lupus, when they get pregnant actually often times get worse. And that there are different things that can happen during pregnancy, which of course is a hormonal event. And so, consequently it probably is more the hormones that causes it to be more common in women than in men.

Lenaki still has bad days but is determined to lead a full life. When she first decided to aggressively pursue a routine of rowing it worried her doctor. But she credits the sport with helping her rebuild her strength.

It just gives me such a positive feeling, which, even days when you're really tired and you think you can't even pull an oar, going out and doing it – the satisafaciton gives me self worth, I feel like I have some control of my disease process and my life. It helps me fight the disease. It helps mentally, which is very important in fighting lupus.

For WebMD, I'm Damon Meharg.