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.”