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Love in the time of lupus

Emmeline Aglipay-Villar and Secretary Mark Villar with their daughter Emma Therese

MANILA, Philippines — So many stories on Valentine’s Day will refer to matches made in Heaven. Well, here’s one where one of the partners is living in a virtual Purgatory, suffering from an autoimmune disease that spells of sudden attacks of pain and immobility — but despite this unfortunate situation, we’re still talking about a relationship where the two partners are strong achievers in their own rights.

When DIWA Representative Emmeline Aglipay-Villar was first diagnosed with lupus, she was a fresh graduate from UP Law. At first, she ignored all her symptoms, from the stiffness she felt in her hands and ankles, to the swelling of her feet and legs. But one day, at about 2 a.m. — she could no longer move her hand. It was then that she decided to bring herself to the hospital. Her blood pressure was high. Her urine had protein and her hemoglobin was low. They needed to transfuse blood. Diagnosis revealed that she had glomerulonephritis, an acute inflammation of the kidneys. Even then, she still insisted on signing a hospital waiver that would allow her to leave, and still managed to submit the document required for the next day. For several years, this was the kind of work ethic Rep. Em has espoused; not once did she use her condition as an excuse.

It was this personal, solitary battle with lupus that led her to establish the Hope for Lupus Foundation — a non-government organization, which aims to promote the early detection and proper treatment of lupus by increasing awareness about it. Em thought that no one should have to battle lupus alone. Via information made readily available, referrals, moral support, and in special cases, financial assistance; Hope for Lupus’ mission is to make those afflicted aware that lupus is not a death sentence. Last year, Em collaborated with three rheumotologists and launched the Living Better with Lupus book — a guide to living full and meaningful lives even if suffering from lupus. Singers Selena Gomez and Toni Braxton are two examples of celebrities who have lupus.

The Hope for Lupus Run held at the Mall of Asia last month is another example of taking steps to stamp out the fear and ignorance associated with the disease. As is the “Lupus Butterfly Interactive Exhibit Tour,” which is being brought to hospitals and malls. A lupus fund was created with the Philippine General Hospital as partner. An art auction was held late last year to help kickstart this fund.

Em’s story is a story of perseverance and resilience. In 2010, she waged a successful nationwide campaign as representative of DIWA partylist. Since then, she has been fighting for women’s rights, gender quality and better labor conditions in the halls of Congress. It was during her first term that she met her present husband — Department of Public Works and Highway Secretary Mark Villar, who was then a Congressman himself.

Sec. Mark would admit that it took him one year to convince Em to go on a date. He was not her type. But the first date went well. Better than they both expected. After several dates, Em admitted to having lupus, removing both her wig and makeup. But at that moment, he knew this was the woman he wanted to marry. He didn’t mind the rashes, the hair loss, and the frequent visits to the hospital. He was ready for the doctor appointments. Mark knew lupus was going to be difficult to accept and live with, that there was no known cure. There was a high probability that Em would never bear a child.

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But after they got married, he remembered praying to St. Therese, promising to name their first daughter after the saint should their wish be granted. A miracle happened and a few months after, Emma Therese was born. That was in 2016. Today, there still are days when Emmeline Aglipay-Villar feels the pain in her lower back and her joints. Some days, rashes still appear on her face and body. Em relies on the Ever Bilena Liquid Concealer and Matte Two-Way Cake to cover these blemishes, and laughs saying, “As Ever Bilena is such a staunch, major supporter of the Hope for Lupus Foundation, how can they not be my go-to cosmetics brand.”

At the aforementioned Hope for Lupus Run, Mark accompanied Em on the ceremonial 1k run that had victims of Lupus joining in and showing that life goes on, and in the case of the couple, even love can thrive, despite lupus.

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