On a mission of hope

 (The Philippine Star) |

Original article

 

There is an unmistakable beauty in DIWA party-list Rep. Emmeline Aglipay-Villar. With her living the inspired life, her beauty radiates even more.

The hardworking congresswoman, who is also the chairperson of the Women and Gender Equality committee, is determined to fulfill a mission with an organization that is dear to her heart, Hope for Lupus Foundation (hopeforlupus.org.ph) — to “shed light on the disease and help people win the fight against it.”
Em, wife of DPWH Secretary Mark Villar and mom to one-year-old Emma Therese, was diagnosed with lupus in 2007. According to Hope for Lupus Foundation, lupus is a “lifelong disease wherein the individual’s defense system attacks various parts of the body leading to pain and disease, and if left untreated, death. The organs most often affected are the brain, heart, lungs, liver, kidneys, blood vessels, joints, the tissues and the skin and the overall nervous system.”

Before Em was diagnosed with lupus, different symptoms materialized: from simple rashes to unbearable joint pains but these did not stop her from doing her daily tasks. At first, she really didn’t talk about the disease because there is a stigma that if one has lupus, one will not be able to serve as a politician but she debunked this idea through her tireless dedication to fulfill her job at hand. It was definitely not an easy task back then but Em valiantly fought the battle by keeping a positive disposition and having a strong support system, especially with her father, former PNP chief Edgar Aglipay and mother Marinette.

“One of Hope for Lupus’ missions is to provide support, care and empower people with lupus and their families because a lot of people cannot afford the treatment. The foundation also seeks to raise awareness about the disease because until now, many people with lupus remain undiagnosed and given improper treatment. I don’t want to see a single person dying because they their sickness is not diagnosed; diagnosed too late or they cannot afford the treatment. That’s why I put up the foundation because you can have this disease treated,” says Em, who also shares that it took her eight years to get the disease under control.

Em reiterates the importance of a support system because a lot of people with lupus go through some form of depression. This is brought by a lot of changes in their body and they feel that their life as they know it is over. And for people who have lupus, Em has this to say, “Don’t let the disease take control of you because you have a choice to live the life you want it like I did. Take things one step at a time with a positive outlook. You have to get the treatment, drink the medicines, rest and get well just like any sickness. Know that you could fight the disease and you have people with you to fight this battle. You have me. You have the Hope for Lupus. You have other Lupus Warriors who will rally behind you.”

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Em’s love for life is evident in her many roles — as a wife, a mother, a daughter, a party-list representative, an advocate of life, and a woman. With all these different roles, it is important for Em to also nurture her mind and body to be the best version of herself.

With the demands of her job in Congress, Em may sometimes miss her regular Pilates workout but she makes sure she incorporates mini-workouts with her daily activities. “I sneak my workouts when I play with Emma like when I carry her, I do squats. Or in Congress, instead of taking the elevator, I take the stairs.”

For her simple regimen, Em makes sure her face is thoroughly cleansed. She puts sunblock, which serves a double purpose of helping her avoid getting wrinkles caused by the sun and also blocking the UV rays that is harmful for people who have lupus.

Em embraces her femininity with makeup and her signature natural everyday look. “I do my own makeup every day. I don’t have time to put on full makeup at home so sometimes when my schedule is tight, I put makeup in the car!” Em candidly shares.

For her simple everyday makeup, she just uses BB Cream for her face to cover minor skin imperfections. For those who are also into no-fuss look, try the Ever Bilena Matte Two-Way Cake, which creates a weightless feel for a natural matte finish that lasts all day. It can be used either wet or dry depending on the desired coverage. There is also the easy-to-use Ever Bilena Liquid Concealer that hides minor skin imperfections like blemishes and dark circles under the eyes.

Em is also fond of highlighting her lips with her favorite nude lipstick shades like the Ever Bilena Matte Lipstick in Sexy Nude. This well-loved neutral shade in a velvety matte finish maintains lips’ moisture for the everyday look.

Em takes charge of her life with grace and confidence — characteristics that are inspired by her dreams. At the end of each day, Em is always grateful. “I am grateful for my family — my parents, my husband, my daughter. I am grateful for being alive and this life that I have. I am thankful that I am able to be active and do all things because there was a time that I wasn’t able to do so. Now, I am able to work and have this opportunity to help people as a representative of DIWA and Hope for Lupus. I have a lot to be thankful for that opportunity to be able to help others,” she concludes.

After painful battle with lupus, Rep. Emmeline Aglipay-Villar out to spread hope

Cathy Cañares-Yamsuan
Philippine Daily Inquirer
03:10 AM November 29, 2016
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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.

Rep. Emmeline dreams of lupus-free Phl

 

FUNFARE By Ricky Lo (The Philippine Star)
Updated December 3, 2016 – 12:00am
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What does DIWA Party-List Rep. Emmeline Aglipay-Villar, wife of Public Works Sec. Mark Villar, have in common with Selena Gomez, Lady Gaga, Toni Braxton, Michael Jackson and Nick Cannon? They are all battling lupus but they refuse to be beaten by the incurable/untreatable (but manageable) disease. Like somebody I know who has it (and who has to undergo dialysis thrice a week, which is very expensive, but thank God because he lives in the States and enjoys the benefits of medical insurance), these celebrities go on with life although Selena was forced by lupus to cut short her concert tour last July after her stint in Manila.

Of course, the most famous lupus victim was Pres. Ferdinand Marcos who failed to keep his condition under wraps.

According to a medical book, lupus is an autoimmune disease that causes swelling (inflammation) and a wide variety of symptoms. It affects each individual uniquely. Some people have only a few mild symptoms and others have many, more severe symptoms, among them: fatigue, recurrent low-grade fever, rashes, itchy lesions in some areas of the body, discoloration in the fingers and toes, chest pains and shortness of breath, swollen painful joints, gastro-intestinal problems, etc.

“I have all those,” Emmeline told movie writers over lunch yesterday at Ka Tunying’s restaurant (owned by Anthony Taberna, located right across from the GMA Network along Timog Avenue, Quezon City). “Lupus can be hard to diagnose because it hides behind various symptoms. Once you have it, you have it for life. All you can do is take medications to manage it.”

She should know, having lived with lupus for many years starting when she was into her early 20s and still single, until she and Sec. Mark got married, battling what could be a debilitating disease up to now that she’s holding office regularly in Congress for the Democratic Independent Workers Association (DIWA).

“I underwent chemotherapy and I lost my hair, so I had to wear a wig,” Emmeline related. “I had rashes on my face and I was bashed for wearing thick make-up which I did to hide the rashes. For a while, I thought I wouldn’t get married because I was worried that I couldn’t have a child, which is very frustrating not only for a woman but also for her husband.”

But Mark was undaunted, ignoring lupus in his effort to win the affection of Emmeline, who is the daughter of Ret. Gen. Edgardo Aglipay and the first cousin of Rico Yan (whose dad Roby is the brother of Emmeline’s mom Mawie). The couple has a daughter, Emma Therese, who turned a year old last Sept. 21.

“Luckily,” added Emmeline, “although I underwent chemotherapy, I didn’t have to undergo dialysis.”

With the aim of raising awareness of the disease and supporting patients and their families, Emmeline will launch her Hope For Lupus Foundation tomorrow, Dec. 4, at the CCP with an exhibit titled Lupus Warriors and a musical play titled Mabining Mandirigma by Nic Tiongson in partnership with the UP-PGH’s Rheumatology Department. Mabining Mandirigma is a steam-punk dance musical depicting the life of Apolinario Mabini, to be staged at 3 p.m. after the launch. (All proceeds go to the Bridging Lupus Fund for the benefit of indigent lupus patients at PGH).

“There’s a lot of misconceptions and myths about lupus,” said Emmeline who looks hale and hearty. “Because of the lack of information, many lupus patients die from the disease without proper diagnosis and proper treatment. The Hope For Lupus Foundation seeks to raise awareness about the disease by providing national awareness through education, community outreach programs and funding for lupus research in the Philippines. We hope to establish a lupus-free Philippines.”