A RELEVANT SURPRISE BIRTHDAY PARTY FOR REP. VILLAR

REP. Emmeline Aglipay-Villar of Diwa Party List is a lupus survivor and she turned 35 last May 10, which was by coincidence also World Lupus Day. “Talagang malaki ang koneksyon sa’kin ng lupus,” she laughs.

She says she planned to launch her book, “Living Better with Lupus”, in time for her birthday. “But hindi natuloy kasi nagkaproblema sa distribution, so sa June na lang. I’m also supposed to launch a project providing umbrellas kasi kalaban naming mga may lupus ang sikat ng araw dahil we’re photosensitive, hindi rin natuloy. So nabanggit ko sa husband ko, DPWH Sec. Mark Villar (the son of Sens. Manny and Cynthia Villar), that I’m so sad na walang mangyayaring kaganapan sa birthday ko. I didn’t know, he prepared pala this surprise birthday party for me.”

The secret bash was held at Annabel’s and Rep. Emmeline was really surprised to see the lupus patients she’s been helping to be there to greet her in person. Also present were Mr. Dioceldo Sy and his basketball players for Blackwater team, actress Patricia Javier, selected member of the press led by Manay Lolit Solis. Sec. Mark says he didn’t like to see his wife so sad so he quickly organized the surprise birthday bash for her. “I don’t usually organize surprise parties like this but I did it for my wife who I love so much,” he says.

Some lupus survivors shared their experience and struggle with the disease. Rep. Emmeline herself was diagnosed with lupus when she was 25 years old when she was a new lawyer. “I suddenly had rashes, blisters on my face and body, very painful joint pains. Important na ma-detect agad before it gets worse and destroy other organs. Lupus is a disease where the body’s immune system attacks healthy cells and tissues. Many lupus patients die without proper diagnosis and treatment, so our Help for Lupus Foundation aims to raise awareness about the disease through education, community research programs and funding Lupus research.”

 

Original post: http://www.journal.com.ph/entertainment/showbiz/lovi-s-second-time-with-vhong

Misis ni Sec. Villar, tuloy ang laban sa Lupus

By Lolit Solis

Bawal na bawal pala sa mga may sakit na Lupus ang sobrang tindi na sikat ng araw dahil makaaapekto ito sa karamdaman nila.

Nalaman ko ang impormasyon mula kay Diwa Party-List House Representative Emmeline Aglipay-Villar na isinusulong ang paggamit ng payong ng mga lupus patient.
Malawak ang kaalaman ng loving wife ni DPWH Secretary Mark Villar tungkol sa lupus dahil ganito rin ang sakit niya na natuklasan noong 2007.

Rep. Em naiyaksa sorpresa ni Sec. Mark

Kahapon ang 35th birthday ni Em at nag-celebrate siya sa piling ng Lupus Warriors na tinutulungan ng foundation na itinatag niya, ang Hope for Lupus.

Eksakto sa kaarawan ni Em ang World Lupus Day kaya mala­king sorpresa sa kanya ang party na regalo ni Secretary Villar sa isang restaurant sa Quezon City.

Clueless na clueless si Em sa surprise birthday celebration dahil meeting ang pupuntahan nila ang sinabi sa kanya ni Papa Mark.

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Walang-wala sa isip ni Em na nagtipun-tipon sa restaurant ang kanyang mga kaibigan, ang Lupus Warriors at si Emma Therese, ang one and only daughter nila ni Papa Mark.

Tiniyak ni Papa Mark na magiging unforgettable para sa misis niya ang surprise birthday party na maaga na nagsimula dahil bibiyahe pa sa ibang bansa ang DPWH Sec., kasama si President Rodrigo Duterte.

Anim na araw na mawawala sa Pilipinas si Papa Mark dahil isinama siya ni Papa Rody sa pagbisita nito sa Cambodia, Hong Kong, at China.

Invited guests sa paggunita ng World Lupus Day ang former sexy stars na sina Patricia Javier at Ynez Veneracion.

Si Papa Dioceldo Sy, ang businessman na may-ari ng Everbilena at Blackwater Elite basketball team ang nag-imbita kina Patricia at Ynez na parehong may sapat na knowledge tungkol sa Lupus. Nakita ko rin sa event ang nagtatangkaran na basketball players ng Blackwater Elite.

Si Em ang founder ng Hope for Lupus Foundation na pangunahing layunin na ma-educate ang mga Pilipino tungkol sa karamdaman na kumikitil ng maraming buhay kapag hindi naagapan.

“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 the symptoms of lupus and received the proper treatment early on, their lives could have been saved, “ ang sabi ni Em.

Rep. Emmeline Aglipay-Villar Given A Surprise Birthday Party Of Husband DPWH Sec. Mark Villar On World Lupus Day

Rep. Emmeline Aglipay-Villar Given A Surprise Birthday Party Of Husband DPWH Sec. Mark Villar On World Lupus Day

REP. EMMELINE AGLIPAY-VILLAR of Diwa Party List is a lupus survivor and she turned 35 on May 10, which is by coincidence also World Lupus Day. “Talagang malaki ang koneksyon sa’kin ng lupus,” she laughs.

She says she planned to launch her book, “Living Better with Lupus”, on May 10 in time for her birthday. “But hindi natuloy kasi nagkaproblema sa distribution, so sa June na lang. I’m also supposed to launch a project providing umbrellas kasi kalaban naming mga may lupus ang sikat ng araw dahil we’re photosensitive, hindi rin natuloy. So nabanggit ko sa husband ko, DPWH Sec. Mark Villar (the son of Sens. Manny and Cynthia Villar), that I’m so sad na walang mangyayaring kaganapan sa birthday ko. I didn’t know, he prepared pala this surprise birthday party for me.”

The secret bash was held at Annabel’s and Rep. Emmeline was really surprised to see the lupus patients she’s been helping to be there to greet her in person. Also present were Mr. Dioceldo Sy and his basketball players for Blackwater team, actress Patricia Javier, selected member of the press led by Manay Lolit Solis. Sec. Mark says he didn’t like to see his wife so sad so he quickly organized the surprise birthday bash for her. “I don’t usually organize surprise parties like this but I did it for my wife who I love so much,” he says.

Some lupus survivors shared their experience and struggle with the disease. Rep. Emmeline herself was diagnosed with lupus when she was 25 years old when she was a new lawyer. “I suddenly had rashes, blisters on my face and body, very painful joint pains. Important na ma-detect agad before it gets worse and destroy other organs. Lupus is a disease where the body’s immune system attacks healthy cells and tissues. Many lupus patients die without proper diagnosis and treatment, so our Help for Lupus Foundation aims to raise awareness about the disease through education, community research programs and funding Lupus research.”

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

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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.

LUPUS STORIES: “My Journey With Lupus” by Agnes Santos

LUPUS STORIES:
“My Journey With Lupus”
By Agnes Santos
I am Ma. Agnes H. Santos, 46 years old, and a mom to three boys. My children are my love and happiness. Because of them, I fight! I am stronger than Lupus! This is my story.
Call me Annie.
My journey with ” LUPUS ” has not been that long yet. About 6 years. I was diagnosed with Discoid/SLE Lupus Erythematosus with finding lesions on the face. I have been diagnosed in 2010 at the age of 39. Little did I and my family know that the battle against lupus was going to be difficult to fight. This is because most people don’t know what lupus is.
Having lupus is as if something evil that exists in my life for almost 6 years. I wish I could throw it out in the ocean. Oh if only I could, I would. It made me cry. Very often, I cry and just cry. It gave me extreme mood swings and even made me look older than my actual age. It’s very difficult to get up in the morning and sometimes, my walk home is excruciating.
The arthritis lupus has given me is a burden. Most of my income goes to the medicines. There are days I feel completely depressed and disgusted with myself. Sometimes, when I look in the mirror, I can imagine lupus laughing at me. I used to enjoy the sun’s warm rays and now, I can’t. Almost every physical activity I love to do, now seems impossible.
And oh, these Lupus fogs? I forget many things! Sometimes, It’s hard to have a conversation. I have eye problems, retinitis pigmentosa, and rashes.
Time made me accept and embrace what I have. With lupus, I have become more mature and made me compassionate. I have learned many things on this journey including letting go fears and hate.
Sometimes, I am glad to say that I have Lupus, which sounds extremely contradictory to everything I just said. Because I realized that without it, I would never have gotten to meet many amazing people I have met along this journey. People who really care and look at you as a person rather than someone with a disease.
I have learned that I am not alone in this journey and that there are other people who have it worse.
Currently, I am glad that my lupus is tamed for a while. I thank God that at least I’m not dying at the moment or dead.
Despite my condition, I still manage to smile and go on with my life. I am lucky to have HIM by my side, always guiding me and letting me know that I am stronger than anything and everything.
Discrimination never puts me down. Instead, it pushes me up.
I pray they find a cure soon for me and my other lupie friends.
*You may share your lupus journey and submit it to info@hopeforlupus.org.ph

Take Two: Holding Back the Tears

“Take Two: Holding Back the Tears”
By Jenet Lisa
Who am I now? Am I really happy with my present life? Have I really accepted my fate? Those smiles, that laughter of mine, are they real? I am not really sure.
When I learned I had lupus, I kept asking myself these questions; where do I go from here? How long have I been living with this disease? How long do I still need to live with this disease? What are the sufferings await me? Above all, “Why should it be ME?”
I seem to keep losing faith; I seem to keep on losing everything. I don’t know what to do whenever pain attacks, my eyes are floating in tears, my mind is still full of questions. Until when do I need to bear this pain? It seems like my road is full of shards of glass that cause wounds in my feet where I can’t move a single step because of pain. My heart bleeds knowing that I can’t do anything to heal those wound; that I can’t continue walking my life’s journey as though nothing is wrong. I am sad that I can do nothing but cry because no matter the amount of medication, no matter how much money I spent, the wounds will never be healed. Every path I take has shards of glass that will continue to ruin my way to a better life. It has already partly ruined my life. Life is indeed rough, unfair. This illness is a gamble that I know I couldn’t win no matter whether I am an expert on playing game. No matter how I cheat in this life’s journey, I know I will never win. I know I will loose the game.
“Every path I take has shards of glass that will continue to ruin my way to a better life.”
I do not know what awaits me in the coming days, I really don’t know how to deal with this illness, Today, I can still smile, I can say with my head up I can say that I am fine! I can say that there’s nothing wrong with me, that everything will be fine, that I am Okay. But sometimes, tears fall as I think of the future. What if I become blind? What if I am paralyzed? What if my organs have already affected by lupus? What if things go wrong? Where the hell will I get money to spend for my medications? Where in this world can I buy strength? When this fear of mine becomes real, will I Still be able to smile? Will I still be able to laugh?
Whenever I think of these things, I can’t help my tears from falling, because even if I hold it back, my tears just fall. They fall because of so much heartache. I feel so sad because I don’t own my life. I feel sad because destiny chose me and I have no power to control it or change it. I am just a human being who owes everything to God.
Should I be thankful? Yes, I should, because my family has stood by me, because they never left my side. They are there even at the darkest hour of my life and I know they will stand by me no matter what happens. For this reason, I know I can still Smile, I know I can still laugh because even if this damn world will take everything from me, I am sure they can never take my family away from me. My family is my strength, When I become blind, they will be my light, If I become paralyze, they will be my bed, when things seem hopeless, they will be my hope. So much my family will do for so, I know, I can still be happy.
Walking on a road of broken glass is really painful, it has never been easy, and it is a constant fight. I know I will never win but I will continue to fight. It may cause so many wounds but I will not give up. I will face each trial, I will play each game, I will lose but it’s okay. Each step, each ache, each tear may lead to an ocean of tears, but I will hold the tears, I will hold it back, I will try hard so I can finish the game right.
*You may also submit your lupus story to info@hopeforlupus.org.ph