It was Diwa Rep. Emmeline Aglipay-Villar’s long, lonely and unrecognized battle with lupus—in which the body’s immune system goes on hyperdrive and attacks healthy cells—that spurred her to set up the Hope for Lupus Foundation. It advocates awareness and early detection of the debilitating disease.

In 2007, Aglipay was a new lawyer in her mid-20s when she brought herself to the hospital at 2 a.m. one night. She could no longer type the crucial legal papers she needed to finish because of the agonizing pain in the joints of her hands.

Aglipay’s secretary earlier asked her to see the office’s physical therapist for the severe pain in her lower back and her joints. But Aglipay ignored the advice, choosing to work than see a doctor because she thought the pains were stress-induced. After all, Diwa had just lost its first bid to represent workers’ interests in the House of Representatives a few weeks before.

However, she also suffered rashes on the face and body that she dismissed as cystic acne. The swelling of her feet and legs and water retention, meanwhile, she blamed on stress eating and lack of exercise.

Aglipay was floored by the doctors’ diagnosis. An emergency biopsy revealed glomerulonephritis, an acute inflammation of the kidneys. She signed a hospital waiver promising to return after formally informing the law office of her medical condition.

Major kidney damage

But it took several months and numerous consultations with various specialists before Aglipay eventually learned she was suffering from lupus. (The most common type is systemic lupus erythematosus, which the late president Ferdinand Marcos reportedly suffered from but was kept secret from the public.)

Rashes on the face and arms and joint pains are its known symptoms. In Aglipay’s case, major kidney damage had already set in because she failed to get immediate treatment.

The back pain and swelling that she endured were supposed to be her body’s way of indicating that her kidneys were very sick.

Her anemia also got worse, because the kidneys released protein and blood instead of letting them stay in her body.

The doctor’s advice included avoidance of stress because it was fueling her flare-ups. Aglipay resigned from the law firm and began steroid treatment. The ensuing 25-lb weight gain made her unrecognizable to friends.

“I also lost my hair,” she said. “This has happened several times since the diagnosis, whenever I was stressed. I couldn’t walk because of painful ankles and knees. The worst was my hands; I had to rely on other people to feed me. That really bothered me because, before that, I was very independent.”

The doctors eventually lowered her steroid dose, which led to more hair loss. The steroids also had an immune-suppressant effect that made her more vulnerable to infection.

Wearing a surgical mask was supposed to provide protection from communicable diseases. But when she became Diwa’s representative in Congress in 2010, it didn’t seem appropriate for a congresswoman to mingle with her constituents behind a mask.

Unfazed

It was during her first term that the neophyte solon met then Las Piñas Rep. Mark Villar. Aglipay still had her flare-ups every now and then, but the young congressman was apparently unfazed. “I didn’t have hair when Mark courted me,” she recalled.

At that time, Aglipay was wary of getting into a relationship because of a bad breakup years before. Besides, “I did not like him,” she added with a grin.

Villar, however, would call on the Aglipay home in Valle Verde. When she realized he was serious, she told him about her lupus.

“Ano ’yun,” he asked.

“Google mo na lang,” she replied.

She recalled how he looked really “concerned” the next time they met. Still, Aglipay asked Villar to give it some thought. When he remained insistent, Aglipay decided to show herself without her wig and makeup.

“I tend to overthink things while he’s the type who is carefree. He can make light of situations that are serious,” Aglipay noted.

The two married in 2014 and are now proud parents of 1-year-old Emma.

New foundation

On top of her legislative duties, Villar very recently set up Hope For Lupus with fellow patients, Inquirer Lifestyle columnist Melanie Cuevas, and Lila Shahani, with volunteers from the medical field and private sector.

Hope for Lupus will be launched on Dec. 4 with a staging of “Mabining Mandirigma,” a steampunk musical that features modern dance, at the Cultural Center of the Philippines.

The foundation said as many as 5 million people worldwide have lupus, “but because of the lack of information… even among people in the medical profession, many people with lupus remain undiagnosed, are given improper treatment, and die.”

Aglipay said that, in her case, it took a while before doctors confirmed her condition because of many “misconceptions and myths” about lupus.

Despite the grim picture, Aglipay stressed that lupus is manageable especially if seen early.

“It’s not a terminal disease. People die because they cannot afford treatment. That’s why Hope for Lupus intends to be an active and dynamic organization that provides support for people with lupus,” she explained.

Daughter Emma is an obvious inspiration to help other lupus sufferers as well.

“I want to see Emma grow up. I want to see my children. And so much can be done if we have early detection and awareness,” the congresswoman said. INQ