"My Sister Was Such a Strong Person."

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Doctors couldn't figure out what was wrong with Kellie Martin's sister, Heather. By the time they realized it was lupus, it was too late.

My sister, Heather, and I have always been best friends. I saw her take her first step, and she watched me ride a bike for the first time. We waited together on the corner after school for the ice cream man. I never missed her basketball games, and she always watched the shows I worked on. We went through our parents' divorce, and after that we thought we could get through anything, as long as we were together. For 19 years, I watched my little sister, Heather, grow into a beautiful woman. I was there when she was born, and I was there when she died.

A few days after finishing her sophomore year at college, Heather couldn't get out of bed. The doctor said it was the flu. This was a doctor who was new to us, and he'd never had to handle anything more than a sore throat in my family.

But when Heather's abdominal pain, fever, nausea and insomnia got worse, the doctor prescribed Compazine, an anti-nausea medication. Heather had a violent allergic reaction to it. I remember I was at Yale University, with my friends--we were actually watching ER (this is before I was on it)--and my mom called me, screaming and crying: "Your sister is convulsing!" Heather had lost control of her neck muscles, and her eyes were rolling back in her head.

That was Heather's first visit to the emergency room, but she was treated only for the convulsions. They didn't deal with anything else--her stiff joints, intense muscle pain, fatigue, her inability to eat. She was so weak, she couldn't hold a spoon. Later, she couldn't eat because she had sores in her mouth, and it hurt her too much...

Dr. Jon Kaiser, medical director of the Jon Kaiser Wellness Center, San Francisco: Lupus is an autoimmune disease with different variations, but it's pretty much all under one heading: systemic lupus erythematosus, or SLE. The initial symptoms can include fatigue, joint pains and a butterfly rash, where the cheeks are very rosy. Bruising can be a symptom too; and strokes can occur. But these symptoms are very vague, and the diagnosis is often not made.

Virginia Ladd, president, American Autoimmune Related Diseases Association: Lupus is far more common in women of child bearing age- that's from 13 to 45- and among African American in general. Men do get lupus, but it affects about five women for every one man. It's really thought of as a young woman's disease.

The following night, Heather had to go back to the emergency room for abdominal pain and horrible cramping in her legs. They gave her a pain killer and sent her home. The next day, my mom had to take her back again. They went to the emergency room three times in three days. Then they finally put Heather in the hospital. My mother had to beg our doctor to admit her.

At the hospital, the nurses took blood from Heather three times a day, and each day, a new type of doctor was called in to see her- an internist, an infectious-disease specialist, a hematologist. As a last resort, they gave Heather a test for lupus. But they still thought Heather had an unusual virus, so the doctors discharged her.

Jon: Depending on how suspecting the physician is, she or he might not think to do a lupus panel. Most of the time, they'll treat the person's fatigue or rashes, etc. It's only when other systems of the body become affected that a doctors starts to realize that there might be more going on than just a case of joint pains or something like that.

"Unlike me, Heather had never been scared of anything. For the first time in her life, my 19-year-old sister crawled into bed with our mother."

Virginia: Many times, health histories ask about cancer and high blood pressure running in your family, but they rarely ask about autoimmune disease- lupus, Crohn's disease, multiple sclerosis. For any diagnosis, somebody has to think of it first or suspect it.

My mom and I carried Heather into the house and put her in bed. We knew she'd feel better in her own room, with her dog, Sparky, next to her. She was relieved to be home, but she got weaker every day. It seemed like she was sent home not to get better but because no one knew how to help an incapacitated 19-year-old who had been completely healthy two weeks earlier.

"I still believe that Heather has a virus that is attacking her joints and muscles," the doctor told us. My mom asked if the results had come back from the lupus panel. The doctor said that he'd gotten a verbal response that the test was negative. After telling us to go home and put a cool cloth on Heather's forehead for her fever, the doctor smiled, patted her on the head and left.

Virginia: Misdiagnoses happen, well, partly because doctors aren't listening to the patient. Seventy-five percent of all autoimmune diseases affect women, and the average woman diagnosed with an autoimmune disease has seen six doctors over five years. Six. And more than half have had it implied to them that it's stress or that they're hypochondriacs. Kellie's sister represents the ugliest thing that can happen in lupus. Unfortunately, this happens many times.

That night, for the first time in her life, Heather crawled into bed with our mother. Unlike me, Heather had never been scared of the dark, or anything, when we were growing up. Whenever I couldn't sleep because a monster was in my closet, I would creep into my parents' room. "You're such a baby," Heather would say.

Heather was the rock of the family. When our parents got divorced, my sister was the stuff that kept me together. She was much more like the big sister, even though I'm three years older. She was taller, and she just acted older than me. Like...things like jokes or about sex that I didn't know, I'd ask her about, because even if Heather hadn't experienced it, she knew what it was. And when I'd get hurt, Heather would go fight my fight for me if I needed her to. She'd just make things better. She was such a strong person.

We took Heather to another doctor's office, where her condition was diagnosed two minutes after her examination. The doctor looked really disturbed when he saw Heather's hospital charts and medical history. He ordered a second lupus panel because the first one never appeared in her file. The next day, Heather was admitted to the hospital because of dehydration and kidney failure--both caused by lupus.

Jon: There are three dangers with lupus. The first is misdiagnosis. Then there's the treatment itself- systemic steroids, which can have lots of side effects. The third is the damage that occurs from the progression of the disease.
See, the immune system is programmed to attack foreign particles and invaders. With lupus, the body produces antibodies to it's own DNA. So the immune system sees your own body's "fingerprint" as being foreign, and it attacks the body tissues because it thinks that they're not part of you. We don't know what triggers that.

We were given a list of treatments that Heather would be getting: steroids, vitamins, fluids. During her first week at the hospital, the blood vessels in Heather's lungs began to burst. Her breathing became more labored. The doctors also found that the lupus had affected Heather's liver and bone marrow. The list of treatments increased to antibiotics and chemotherapy.

Heather liked to be in control, and while her body was so out of control, she wanted to make decisions. Like, they had to ask her if they could do this test or that test, and she'd always say, "I need to think about this." And she'd think about it for a second, or an hour, then she'd say, "All right, I'll let you do that," even though she knew she had no choice.

When they said she had to go into the intensive-care unit, it was her choice to go in. After that, nothing was her decision, because she was sedated from then on.

The night before Heather went into the ICU, she had an amazing burst of energy. It was exactly like the old Heather. She didn't want to rest, she wanted to talk--about school, basketball, friends and boyfriends. She told me and my mom things that she wanted us to know. Because, you know, teenagers have these other lives that their moms and sisters don't really know about. She just wanted to include us. She laughed, she sang... she kept tearing off her oxygen mask to sing television theme songs. Heather loved television! She loved Lucy, she loved Nick at Nite, so she was singing songs like Green Acres. And she wanted to talk on the phone. I'd had a fight with my then-boyfriend, and Heather called him and said, "Don't you make my sister cry. You be good to her."

We knew what she was doing. I just--I think my mom knew. We don't talk about that night much. But it was amazing. It was such a gift. That's how I think of it....

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