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Published: Jul 22, 2009 12:30 AM
Modified: Jul 21, 2009 05:08 PM

Living with lupus
Young women at greatest risk for immune disorder
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The Lupus Foundation hosts a number of Piedmont events and programs, including a new teleconference format that lets people with lupus take part in lupus research even if they are too sick to leave their home and physically go to a conference. The next teleconference will be 10 to 11:15 a.m. August 8. The teleconference is free for North Carolina residents, $5 for others. Pre-registration is required By August 5: (704) 849-8271 or (877) 849-8271 Toll-Free. info@lupuslinks.org

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MEBANE - MEBANE -- Alexis Drago is a petite woman with glossy dark hair that bounces as she enthusiastically describes her passions: family, theater and life.

She's 36, a mom and co-founder of the Mebane Acting Company.

She doesn't look like someone who has a life-threatening disease.

"It's the biggest challenge of having lupus," she said. "To look at me, well, I don't look sick."

In North Carolina, an 45,000 people are living with lupus. Over 90 percent are women of child-bearing age, between 15 and 44, says Christine M. John, president and CEO of the Piedmont Chapter of the Lupus Foundation of America.

Looking healthy while being very ill, is the main reason the foundation is reaching out to women with a national ad campaign: couldihavelupus.gov.

"We're very concerned with getting the message out to young women, and especially women of color," John said. Black women are three times more likely than white women to get lupus. Many are not identifying symptoms they might have -- hair loss, rash, fatigue, joint and muscle pain, and low-grade fever -- as being severe.

Lupus is an autoimmune disease that can affect the skin, joints, heart, lungs, blood, kidneys and brain. When the body can't tell foreign substances from its own cells and tissues, it attacks itself, causing inflammation, pain and damage to various organs.

Drago didn't notice symptoms until she was 12.

On the first day of band camp in 1985, she developed a bad nose bleed.

Her mother took her to the family doctor, where Drago began vomiting blood. She was admitted into the hospital for a blood transfusion and spent the next 20 days getting tests in the Children's Hospital of Pittsburgh.

"Everything forever changed for me after that," Drago said.

Her doctors diagnosed her with systemic lupus and said she'd had lupus activity since she was 10, abnormal blood clotting and past nose bleeds being early symptoms. Other symptoms included easy bruising and constant fatigue.

Drago began undergoing chemotherapy for her kidneys. High school became a blur of more missed classes and weekend treatments in Pittsburgh.

Drago attended Greensburg's Seton Hill University and in 1998 took job teaching at a charter school in Phoenix, Ariz. "The dry humid climate was ideal for me," said Drago.

In Arizona she met her husband, Thomas, current theater arts director of Chapel Hill High School, who was working at a community theater in Phoenix.

"It was a shock when I got pregnant," said Drago.

"I wasn't supposed to be able to, and it was such a big risk for me," she explained.

Drago was severely ill the entire pregnancy, and her obstetrician warned her not to expect to take her new baby home.

"Pregnancy can complicate lupus and vice versa," said physician Megan Clowse, an assistant professor at the Duke University Medical Center Division of Rheumatology. She recommends women with lupus considering having children consult their doctors and specialists for medication changes before becoming pregnant.

Enrico Drago was born five weeks early, and in perfect health.

The Dragos moved to North Carolina in 2000, when Enrico was 9 months old.

Soon after, Drago was stunned to find out she was pregnant with daughter Nancy, now 7 years old.

"Considering the risks and the illness, I feel incredibly lucky and blessed to have my two healthy, beautiful children," Drago said.

But it's not easy. Extreme fatigue can keep her in bed for 24 hours or more.

"The children are great when mom is having a bad day," said Drago who works hard to keep a sense of normalcy in her family. "I couldn't do it without Thomas' help."

John says despite the prevalence of lupus, which has no cure and can be fatal, it remains largely unrecognized and underfunded disease.

Drago has monthly and bi-monthly specialist appointments and often does trial studies to help further research on lupus. "I know that I had the best treatment I could get," she said. "There has not been a new FDA-approved Lupus drug in 50 years."

Still, Drago says she has met people and experienced life in ways she never would have had she not had lupus.

"When you realize you have a life-threatening illness, you can shut yourself off or allow it to open up a lot of doors."

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