World Lupus Day

Repost from: http://missfiggyph.blogspot.com/2017/05/world-lupus-day.html
My Lupus flare is a monstrous burden on me. Since September 2016 up to now it penetrated my everyday life starting from the basic up to the mental and emotional states of it. Waking up in the morning thinking it is another Lupus day is basically giving me the “stress” all at once, and how ironic because stress is the most important thing that a Lupus patient must avoid.
But anyway, enough of my drama! Since it’s World Lupus Day, I figured I should be happy. Not because I get to celebrate WLD because of my Lupus, but because I now know that people are getting more aware of this illness, they’re being active of extending the awareness, and most importantly, they’re giving support and spreading love. What a happy day it really is! 🙂
I joined the HFL Warriors Group in hopes that I would find people whom I can talk and relate to when it comes to my illness, and it was indeed one of the best decisions I’ve made. Being a timid type of person, opening up myself to people I barely even know was a big big big step for me.

I was browsing my Facebook feed when a post from the group popped out, it was an invitation for the celebration of World Lupus Day and also as a surprise birthday party for the Hope for Lupus founder, Congresswoman Emmeline Aglipay-Villar, who happens to have Lupus also. Right at that moment I didn’t hesitate to join, I immediately commented my name for the list and was gladly accepted by the admin. Then came May 10, I prepped for the event and went at the said venue, it was held at Annabel’s Restaurant in Tomas Morato, Quezon City. I felt like I am a total gatecrasher when I arrived at the event, kind of nervous because it is really my first time to attend in an event like that and I am totally clueless of what’s gonna happen. But anyway, I just stayed calm and luckily the HFL volunteers where so gracious for assisting me. There was a short sharing of Lupus stories from the survivors, messages from DPWH Secretary Mark Villar for his wife Congresswoman Emmeline, messages from some of their friends, presscon, Miss Em’s Lupus story and many more. By the way, the food was good, it was buffet style so everyone got to have the taste of everything. 🙂
But most importantly, I gained a lot from this celebration. I have gotten the privilege of discovering Lupus in a much deeper sense and to a whole new level, I listened to their stories, I was fed by new knowledge from different walks of life, interacted with real Lupus warriors, and of course got to be a part of the birthday celebration of another true Lupus warrior.
Thank you Miss Emm and Happiest birthday to you! We are all thankful to you for initiating the Hope for Lupus Foundation and for continuously giving support and spreading hope for every Lupus warrior. I wish for your fast recovery and best of health. There is HOPE! 🙂

 

MILESTONE ACHIEVED! 🙂

HAPPY WORLD LUPUS DAY!!! 🙂

Couple goals: Em Aglipay is the happiest girl on World Lupus Day

this politiko is a lucky girl with Mark Villar as a husband.

DIWA Party-list Rep. Emmeline Aglipay-Villar wears many hats for various advocacies, but she saw all of these come together on her birthday last May 10, which also happens to be World Lupus Day.

The politiko was supposed to launch her book on lupus where she shares her experience of living with the disease, but printing got pushed back due to some problems. She also thought she won’t be able to celebrate her special day with her dear husband, thinking that the Public Works secretary would fly off with President Rodrigo Duterte on official business.

But Aglipay got the surprise of her life as Villar stayed and even prepared a surprise for her, as he brought together fellow lupus survivors for a get-together on Em’s birthday.

What a treat. Kilig!

 

Original Post: http://metromanila.politics.com.ph/2017/05/11/couple-goals-em-aglipay-happiest-girl-world-lupus-day/

The Congresswoman

Posted on

 

Life is stressful enough on it’s own. Imagine doing it with a high powered job and living with an autoimmune disease.

Meet the superwoman, Philippine Congresswoman Emmeline Aglipay-Villar.

In October 2007, Em was diagnosed with lupus. She started having blister-looking rashes all over her face and body, her hair started falling off, and she experienced joint pain. She also developed anemia and her back started to hurt – it turned out that her kidneys were failing and this lead to major damage to her kidneys.

Lupus is a hard disease to diagnose because the symptoms are vague. And unlike other diseases, a single lab test cannot confirm it. Some patients die because they have not been diagnosed correctly and they experience severe organ damage. Luckily, Em was diagnosed right on time, but the first 2 years were not a walk in the park.

“It was very difficult for me. I had severe joint pains in my hands, 
ankles, knees, feet, shoulder blades, and hips. I could not do
much without feeling so much pain. I relied on pain medication
to cope with the pain.
I could not feed myself because I could not
use my fingers and hands. I couldn’t walk because of the pain in
my knees and ankles. I was dependent on other people for
basic life activities and this was a hard thing for me to accept
as I am a very independent person. I also had terrible rashes and
I lost my hair three times since I was diagnosed. I had to wear
a full wig of real hair or use hair extensions to hide
the bald spots that were the size of cookies. I also just covered
the rashes with make-up, as much as I could cover it.”
-Congresswoman Emmeline Aglipay-Villar

With the desire to prevent further misdiagnosis and provide a support system, Em launched Hope for Lupus last December 2016 along with Dr. Paulo Lorenzo, Dr. Ging Racaza, Sid Salazar, and Nadine Bernardino. “It is a non-profit organization that aims to promote the early detection and proper treatment of lupus by increasing awareness about this mysterious condition” Em comments.

Em has been living with lupus for 10 years now. She still experiences flare-ups from time to time, but she faces life with a positive attitude. She tries to stay away from stress, something that is very hard for a congresswoman, a wife, and a mother.

Em lives her life to the fullest. Despite having lupus, she knows what she wants and she goes after it. Her strength is amazing. Em is amazing.

Congresswoman Emmeline Aglipay-Villar, Lupus Warrior.

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.”

Lifestyle Feature ( Article MRec ), pagematch: 1, sectionmatch:

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
Read original article

 

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
Read original article

 

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.”

“Fighting Lupus, Saving Lives”, an Exhibit Tour of the Hope for Lupus Foundation for Lupus Awareness

 
Hope for Lupus Foundation (HFL), in partnership with SM Shopping Center Management Corporation, launched its Exhibit Tour for Lupus Awareness entitled “ Fighting Lupus, Saving Lives” last Sunday, February 26, 2017 at the SM Mall of Asia, Pasay City. 
(L-R) Mrs. Marinette Aglipay, SM Management Corp President Annie Garcia, 1st District Bataan Rep. Geraldine Roman, DIWA Rep. Em Aglipay-Villar, Emma Therese Villar, DPWH Sec. Mark Villar, Asst. VP Operations Mr. Perkin So
The exhibit displays information on lupus that answers some of the frequent questions regarding the disease, such as “What is Lupus?”, “What is the Butterfly rash?”, and “What are the symptoms of Lupus?”. The Exhibit tour is a project of Hope for Lupus Foundation which aims to inform more people about the disease and its symptoms and the exhibit will be placed in malls in order to reach more people and help in raising awareness about lupus. 
HFL Founder and DIWA Party-list Representative Emmeline Aglipay-Villar, who was diagnosed with Lupus in 2007, gave emphasis on how early diagnosis can prevent worsening of lupus and can even prevent deaths resulting from lupus. “Many people with lupus die because they were diagnosed when it was too late to do something about it, and more people die undiagnosed. If they had known about the symptoms of lupus and received the proper treatment early on, their lives could have been saved.” Rep. Aglipay-Villar said. “By having this exhibit more people will know about lupus and its symptoms and this will aid in the early identification of the illness in people who have viewed the exhibit or those they know.”, Rep. Aglipay-Villar added.  
HFL Vice President and Rheumatologist Dr. Geraldine Zamora calls for the people to join the campaign by simply reposting and sharing information on lupus. “There is hope in Lupus but we need your help to disseminate information about it”, Dr. Zamora emphasizes. 
As guest of honour and speaker, 1st District of Bataan Representative Geraldine Roman shared that her late sister who had lupus succumbed to the disease in 2014. She pledged to support the cause of the Hope for Lupus Foundation. Shopping Center Management Corporation President Annie Garcia also expressed her support for the advocacy and encouraged people to join the campaign, spread awareness, and help save lives.
 
DPWH Sec. Mark Villar who is the husband of HLF President Em Aglipay-Villar said that his wife is one example of someone who could have benefited from higher awareness about lupus. “My wife had been experiencing joint pains for a long time and she had gone to a physical therapist not knowing that what she had was already lupus. If there was a higher awareness about lupus, she could have gone to a rheumatologist and been treated right away. The disease did not have to affect her kidneys.”, said Sec. Villar.  
Other attendees of the event were PDGen. Edgar Aglipay (ret.) and Mrs. Mawie Aglipay, Senior Vice President for Marketing Mr. Joaquin San Agustin, and Asst. Vice President Operations Mr. Perkin So
You may visit the exhibit for free at the 2nd Flr., South Pavilion, SM Mall of Asia from February 27 to March 4, 2017. The exhibit will then be transferred to SM Mega Mall on March 20-26, SM City Bicutan on April 3 to 9, SM City San Jose Del Monte on May 1-7, SM City Novaliches on May 29- June 4 SM City Sta.Mesa on July 3 – 9, SM City Manila on July 31 to August 6, SM City East Ortigas on September 4- 10, SM City Marikina on September 18-24, SM Center Angono on October 2-8. 
For more information, you may visit HFL website at hopeforlupus.org.ph

Hope for Lupus Foundation Celebrates National Lupus Advocacy Week

February 4, 2017 7:00 pm by Gabriella Galvez

It was October 2007 when Diwa Partylist Representative Cong. Emmeline Aglipay-Villar was diagnosed with lupus. “I remember seeing my parents tear-up as the doctor explained what lupus was. Mama asked with a trembling voice, “Doc, will Emmeline die?” I laughed aloud then and said, “Of course, not!”, even though I was unsure.”

Hope for Lupus Foundation’s primary goal is to educate the public by spreading awareness of the disease, in the hope of garnering further support among and for Lupus patients in the country.  Lupus is a chronic condition and if untreated, can affect and cause damage to internal organs like your heart, kidneys, liver, and lungs. (Photos courtesy of HFL)

Despite affecting 5M people worldwide, many of us know little to nothing about Lupus and its five types, aside from the name.

Lupus is a disease that turns your immune system against you, hence the word autoimmune. However, lupus is not contagious, and its exact cause is still unknown.

This makes early diagnosis important, as in Aglipay-Villar’s case, since she began experiencing symptoms long before she was diagnosed.

Despite the lack of a cure, lupus is far from being incurable, and people with lupus can overcome their disease and control it, just like Emmeline, or Em, to friends and family, did 10 years ago. “I don’t want others to suffer the same fate as I did. I don’t want another person dying of lupus. I had to do something about it. This is one of my motivations for setting-up Hope for Lupus Foundation.”

“I started getting rashes that looked like blisters or cystic acne on my face and all over my body. I got anemia, and my hair started to fall off; I was almost bald. I had joint pains until I could no longer walk or do anything with my hands. I started to have back pains—which turned out were because of my kidneys. My legs, feet, and hands started to get bigger and bigger because my kidneys were not working well; I was retaining water. When I was diagnosed, major damage to my kidneys had already set in. If I had known of the symptoms of lupus, then I could have gone to the correct doctor and gotten immediate treatment. If there was higher awareness of lupus, then I could have been diagnosed earlier and controlled the lupus at its onset and averted major organ damage. It was a good thing that I was diagnosed before it was too late. Many others are not so fortunate: they die because they were diagnosed too late, or they were undiagnosed.”

Upon being diagnosed with SLE (or systemic lupus erythematosus, the most common of the five types), Aglipay-Villar began searching for an organization that could provide support in coping with the disease. After coming up empty-handed, she thought of setting it up herself, so that “not another person with lupus would die or suffer from the disease just because of a lack of awareness, and so that every person with lupus would have an organization to turn to for support”.

She approached Melanie Cuevas and Lila Shahani, who also have lupus, and invited them to join her in fulfilling her said mission. Dr. Paulo Lorenzo and Dr. Ging Racaza, both rheumatologists, volunteered to join the foundation along with Sidney Salazar and Nadine Bernardino, who are fellow advocates for lupus awareness.

With their combined efforts, the Hope for Lupus Foundation (HFL) was incorporated in November 2016.  socialresponsibility-hopeforlupus3

In coordination with the Rheumatology section of the UP-PGH, HFL staged a benefit play called “Mabining Mandirigma” at the CCP, where proceeds went to the Bridging Fund.for Lupus. (Photo courtesy of HFL)

Hope for Lupus Foundation got to work quick, launching their first fund-raising activity last December 4, 2016, for the indigent lupus patients at the Philippine General Hospital (PGH).

The Lupus Bridging Fund of the Rheumatology section of the UP-PGH seeks to provide for the immediate financial needs of lupus patients in their acute treatment phase, aiming to shoulder medical costs that could reach up to P25,000-30,000 (per patient).

Knowing that ninety percent of lupus patients are women in their prime (just like Aglipay-Villar), donating to the Fund will most likely lead to helping a young woman with lupus overcome it successfully so she can return home and resume her livelihood.socialresponsibility-hopeforlupus5

With the volunteers either being family members of lupus patients, or having lupus themselves, the HFL members each shared snippets of their personal experience with lupus. (Photo courtesy of HFL)

Last Jan 21st, 2017, HFL held their first General Assembly, a getting-to-know-you activity where the foundation was introduced its volunteers, and vice versa.

“Most of us shed tears. There was not enough time alloted, so we committed to set up smaller groups for sharing each person’s unique story, as well as tips for coping with lupus.”  socialresponsibility-hopeforlupus4Aglipay-Villar with two members at the Hope for Lupus Foundation’s first General Assemblysocialresponsibility-hopeforlupus7

Attendees were encouraged to share their experiences, whether first- or second-hand. “It lightens the burden and we feel better knowing that someone knows and understands what you are going through,” – Emmeline Aglipay-Villarsocialresponsibility-hopeforlupus10

Anyone can help HFL raise awareness about lupus simply through social media or volunteering to help organize activities, like recreational events or skills training for improved livelihood for lupus patients (i.e. yoga and cooking for lupus patients).

Aglipay-Villar hopes the hating and shaming will stop with increased public understanding of the causes, risks, and treatment of lupus.

“Many lupus patients don’t look sick, but in fact they could be experiencing chronic fatigue, joint pains, or other clinical manifestations. We tire easily and need to rest often. Some lupus patients report discrimination or shaming (in social media or face-to-face) because of the skin rashes/discoloration, alopecia, and “moon face” (from the intake of steroids).”

 socialresponsibility-hopeforlupus9

Knowing that lupus can hit people from all walks of life, like pop singer Selena Gomez, can help promote awareness of the disease and help patients become more empowered to share their experiences with the public.

With the first week of February being National Lupus Advocacy Week, HFL will begin putting up exhibits with basic information about lupus in different malls and hospitals in Metro Manila, starting in SM MOA this month.

Every month, the exhibits will be transferred to different malls around the Metro, and later on to provincial malls.

HFL is also partnering up with the Philippine Rheumatology Association to conduct seminars for barangay health workers, family doctors, and doctors in barrios all over the country.

They will arrange to have a poster of the ‘lupus symptom checklist’ in all barangay healthcare centers. “When people from rural areas go to their health center or their family doctors, these health professionals should be able to spot if that person should see the nearest rheumatologist for testing and possible treatment.”, Aglipay-Villar says.

socialresponsibility-hopeforlupus2

Aglipay-Villar speaks at the Dec 2016 launch of HFL. Her advice for her fellow lupus warriors: “Don’t worry. Lupus, if caught early, is a manageable disease. There are ups, downs, good days, and bad days but we just learn to go with the flow. It gets overwhelming to think that this is a lifelong battle since there’s no cure, but we mustn’t let that thought consume us.”

Her other plans for this year include: writing a self-help book on living with lupus to help people cope with the disease (to launch in May), and another fund-raising project inlcuding an art auction in coordination with Leon Gallery (in December).

“Families of patients with lupus should understand that stress triggers the flaring-up of the lupus, so they should help their love one avoid stressful activities. Of course, it helps to be empathetic and understanding. Many times, there are behavioral changes too. But despite these changes, we are still the same people and we can resume normal activity once the symptoms stabilize to a manageable level. Life does not stop at lupus.” – Em Aglipay-Villar

Misis ni Mark Villar may advocacy sa kanyang sakit na Lupus

Misis ni Mark Villar may advocacy sa kanyang sakit na Lupus By Lolit Solis (Phil Star)

Published on November 29, 2016

Read original article

Tungkol sa Lupus disease ang advocacy ni Diwa Party-list House Representative Emmeline Aglipay-Villar, ang loving wife ni DPWH Secretary Mark Villar.

May Lupus si Mama Emy kaya ‘yon ang napili niya na advocacy. Pareho sila ng young American star na si Selena Gomez na may lupus kaya bakasyon muna ito sa entertainment scene.

May plano si Mama Emy na humarap sa mga miyembro ng entertainment press para ipaliwanag ang advocacy niya at magkaroon ng sapat na kaalaman ang madlang-bayan tungkol sa karamdaman na naging sakit din ni late President Ferdinand Marcos.