Melissa Alexander Dancers have to get their steps perfect for competition, but some days just getting out of bed is difficult for Melissa Alexander.

The 18-year-old from Bradford, Ont., is a dance instructor. Melissa also has lupus, a chronic disease that affects her legs and her brain.

More than 50,000 Canadians have lupus; most are between the ages of 15 and 45.

"I see them as young as two or three," says Dr. Earl Silverman, who works in the rheumatology division at the pediatric lupus clinic at Toronto's Hospital for Sick Children. "On average, it is 13."

Melissa was diagnosed at 15. The disease is four times more common in girls.

"Something predisposes females beyond sex hormones," Silverman says.

Autoimmune disease

T-cells are white blood cells that help protect the body against disease, and faulty T-cell operation is a characteristic of lupus. With systemic lupus erythematosus (SLE), the body's immune system attacks its own tissues and organs - kidneys, lungs, heart, blood cells, skin, even the brain.

Lupus is a complex disease, and researchers are grappling to piece together many puzzling pieces of information to get a clearer picture of what causes it.

"It's the poster boy/girl of autoimmune diseases," says Silverman.

Lupus is a complex disease, and researchers are grappling to piece together many puzzling pieces of information to get a clearer picture of what causes it. For example:

• A 2008 study by researchers at Wake Forest University Baptist Medical Center in North Carolina discovered that the T-cells of lupus patients have a higher number of one of three enzymes, which edit gene messages.
• Dr. Silverman believes children have more genes predisposing them towards lupus and get sicker than adults. The doctor, who does lupus research at Sick Children's Hospital, says environmental studies show that identical twins separated at birth, may not both get lupus.
• A 2006 study by C.J. Edwards and C. Cooper at the U.K.'s Southampton General Hospital suggested early exposure to infectious diseases could lead to lupus

Symptoms

Diagnosing lupus is also tricky because each patient presents differently. The more symptoms the patient has, says Silverman, the easier it is to make a diagnosis.

For example, lupus affects the brain in 25 per cent of patients. About half get a characteristic "butterfly rash" on their cheeks and the bridge of their nose. Arthritis is a classic symptom, but it can also have many other causes.

"In children, we see more fever, more weight loss, but the symptoms are the same as in adults," Silverman says.

Other symptoms can include fatigue, Raynaud's syndrome (a blood circulation condition with cold limbs and skin turning blue), chest pain, easy bruising, anxiety, depression, and hallucinations.

Melissa's tango

Melissa knows all about the frustrations of nailing down a diagnosis of lupus.

On Dec. 15, 2003, she woke with her right arm cold, blue-tinged and swollen. Her family doctor fast-tracked her to emergency. Diagnosis? A blood clot. Treatment? A prescription of Lovenox blood thinner and instructions to lie still to keep the clot immobile until it had broken down (a blood clot can lead to complications such as a stroke).

Transferred to Toronto Sick Children's Hospital, she received another ultrasound. A thrombosis nurse taught her to self-inject Lovenox. The next year and a half brought more ultrasounds and blood tests. Doctors blamed over-exercising or heavy lifting. "I'm a dancer," says Melissa. "I don't really use my arm to do heavy lifting."

She returned to high school. "It was hard because it was in my right arm and I couldn't write," she says, so her dad bought her a laptop. She wore a compressor sleeve to stop her arm from turning blue. But she kept dancing.

Then things got worse. In one school talent show, while moving to the Rolling Stones song Paint it Black, her legs felt numb and she sat down. When she stood, her legs caved and turned blue. Her boyfriend David had to carry her out of the room.

Back at Sick Kids, she recalls, "They said, 'You need emergency surgery now or you'll lose your leg.'"

Doctors blasted her leg with a needle of medication that made her leg turn red hot. She remembers waking up, being in a wheelchair, going to her room and meeting her pediatric rheumatologist. Diagnosis this time? Raynaud's syndrome.

She saw this doctor regularly because she had allergies and asthma. Soon arthritis and the telltale butterfly rash appeared. Her symptoms now numbered six. On Oct. 20, 2005, two months before turning sweet 16, Melissa was diagnosed with lupus.

She began walking with a crutch, but the disease began to affect her behaviour as well as her mobility. September 2006 found Melissa collecting her stuffed animals at home and telling her family it was, "for the children." She also, "started running away from David and thought he was running away from me." Bruises appeared on her body and doctors at the hospital thought she had been abused or was on drugs. During a memory test, she spoke in tongues and quoted the Bible. She hallucinated and saw her food become dirt or bugs, and suffered headaches. The lupus was attacking her brain.

The treatment was 15 different pills a day and once-a-month chemo for seven months.

"Eventually, slowly, I was able to make sense," Melissa says.

But in 2007, the brain symptoms resurfaced. She turned 18 that December. In early 2008, she was transferred to Toronto Western Hospital for adult treatment.

Treatment ups and downs

Lupus patients face a Catch-22. The disease has no cure, but the treatments to control it have nasty side effects. One of the staple drugs is prednisone, a corticosteroid.

'Prednisone is your best friend, but your worst enemy.'—Dr. Earl Silverman

"Prednisone is your best friend, but your worst enemy," says Dr. Silverman. "It's been around for 50 years; in 95 per cent of people it puts lupus into remission. It brings the swelling down. When necessary, we add in the chemo drugs [for the brain], to alter the immune system by killing the cells to halt the lupus."

The snag is the side effects.

"You get puffy cheeks; you get stretch marks," he says. Weight gain "can be on the thighs, the stomach. It causes pimples and increases facial hair."

Just what a teenager needs.

"It is difficult for an adolescent to come for routine visits when they are feeling well just to make sure that they are well," says Silverman. "It's a hard mental adjustment to a chronic incurable disease."

The good news is significant improvement long-term, and providing the brain and kidneys aren't affected, the expected lifespan is normal, although overall, he says, the mean lifespan would be "shortened." Most patients are mobile but a few may need joint replacement because of steroid drug side effects. "Usually mental function is good long-term. The main concern is premature atherosclerosis resulting in heart attacks and or strokes."

Melissa's aunt by marriage died from lupus before Melissa's correct diagnosis. Two middle-aged cousins on her mother's side were also diagnosed with lupus - one died.

Melissa today

Some of Melissa's friends retreated in fear. Not David. She met him in Grade 10, one month before the lupus diagnosis, and they are still together. She has also joined online support groups.

Melissa remains optimistic despite now swallowing up to 17 different pills daily. She has bad pain days, but has more than come to terms with her disease since her official diagnosis when she frantically searched the internet for lupus information and found Lupus Canada.

Lupus Canada is a national volunteer organization that helps lupus patients with education, support, and advocacy. Its online newsletter, Get in the Loop helps youth living with lupus. For three years Melissa has sold the organization's red wristbands at local shopping outlets. Last year she started one of Lupus Canada's annual Walk-a-Blocks in Bradford, and this year her team, Spoonies4Lupies, raised nearly $8,000.

Melissa is also determined to become a certified dance instructor. She taught three years on her own and today teaches ballet and jazz twice a week at Bradford's Elite Dance Corps Studio, and is applying for her PACE certificate through the Royal Academy of Dance. She will require two weeks at the National Ballet School in Toronto, but for now, training is from online video and dance instructors who come to her.

Dr. Silverman encourages his lupus patients to live as normally as possible. "We don't want it to interfere with their life," he says. "They have enough to contend with."

The author is a Canadian freelance writer.