Actress Patricia Javier celebrated her birthday last May 16, but instead of hosting a party for friends, she chose to spend it with patients afflicted with the auto-immune disease called lupus.
Patricia was with Ormoc Rep. Lucy Torres-Gomez and Diwa Rep. Emmeline Aglipay-Villar, who is also the president of the Hope For Lupus (HFL) Foundation.
On that day, these kickass women led the opening of an exhibit on lupus awareness at the Glorietta mall in Makati City.
“It started when I got invited to join the surprise birthday party for Cong. Em last May 10, which also happens to be World Lupus Day,” Patricia told the Inquirer. Emmeline is also a lupus patient. “It’s the first time that I’ve heard of lupus … I realized that people should be made aware of the illness. That’s when I decided to spend my birthday by participating in a worthwhile cause such as this.”
Patricia, who’s also very much into wellness and beauty, said: “I want to share what I know with these lupus warriors in order to give them hope. It’s important to remind them that there are people out there who care for them, that God will not give challenges they cannot handle.”
Lucy, on the other hand, has been friends with Emmeline since 2010. “I didn’t even know then that she had the disease. When she asked me to open today’s event, I didn’t hesitate to say ‘yes.’ As I learned more about lupus, I realized that it’s not like a death sentence, that people can live normal lives if they get the proper treatment and care,” said the former TV host and dancer. “In a personal and professional capacity, I pledged support to Em, because looking at the symptoms now, lupus patients can be anyone, and we just don’t know they have it.”
To raise more funds, the HFL Foundation will release in June a book written by Emmeline, titled “Living Better With Lupus.” Proceeds from its sales will go to the treatment of indigent patients with lupus.
“Each chapter starts with my own experience,” said Emmeline. “All the manifestations are explained in a language that is understandable to lay people. We have other patients to talk about the manifestations that I have no experience with.
“It’s a self-help and reference book for patients and their families. All will be discussed in that book, including what to eat or whether or not using hair dye is allowed.”
“Fighting Lupus, Saving Lives: An Exhibit Tour for Lupus Awareness” will be at SM branches: Novaliches from May 29 to June 4; Sta. Mesa, July 3 to 9; Manila, July 31 to Aug. 6; East Ortigas, Sept. 4 to 10; Marikina, Sept. 18 to 24, and Angono, Oct. 2 to 8.
Article by Marinel Cruz.
Em Aglipay was totally floored by Mark Villar’s efforts to surprise her on her birthday.
The DIWA party-list representative was over the moon with how her hubby cheered her up after experiencing disappointment with distribution problems with her “Living Better with Lupus” book. In just two days, the DPWH secretary was able to organize a gathering for her birthday which also coincides with World Lupus Day.
“Nung nakita ko siya na malungkot na malungkot, pati ako nalungkot. Kaya immediately after nagorganize. Kaya pasensya na if last minute itong event na ito. Kaya I’m so thankful all our friends are here to make the event very memorable for my wife whom I love very much. I hope you enjoy this event. I know it means a lot to you. I really tried hard,” Mark said in his speech.
Em gushed her thanks on Instagram saying, “He always makes a way to make life happier, easier, and more beautiful for me every day, whether it is by making a way to ease my schedule and stress so that I can rest or by surprising me with little pasalubongs like my favourite food or a book that I want. I love you Sweetheart! You always make me feel like a queen. God could not have blessed me with a better husband than you.”
Sniff. Pass the tissues please. We wholeheartedly declare, Sec. Mark and Rep. Em as the King and Queen of Hearts. #
Updated as of 5/23/2017 10:08 AM
by: Joan Leary
For her birthday this year, actress Patricia Javier didn’t have a grand celebration. Instead, she visited lupus patients with Ormoc representative Lucy Torres-Gomez and Diwa Rep. Emmeline Aglipay-Villar who is a lupus patient and the president of the Hope For Lupus (HFL) Foundation.
“It started when I got invited to join the surprise birthday party for Cong. Em last May 10, which also happens to be World Lupus Day,” Patricia told the Philippine Daily Inquirer.
“It’s the first time that I’ve heard of lupus … I realized that people should be made aware of the illness. That’s when I decided to spend my birthday by participating in a worthwhile cause such as this,” she added.
Lucy, who is also a friend of Emmeline, said she didn’t hesitate to open the exhibit on lupus awareness at the Glorietta mall in Makati.
“As I learned more about lupus, I realized that it’s not like a death sentence, that people can live normal lives if they get the proper treatment and care,” she said.
“In a personal and professional capacity, I pledged support to Em, because looking at the symptoms and now, lupus patients can be anyone, and we just don’t know they have it,” she added.
“A Light in the Midst of Darkness!”
By Jenet Lista
I knew myself very well then, but right after I learned that I had “LUPUS”, Things changed as though they will never be the same again, never again.
After I had known about my illness, Tears fell endlessly. Shocked, I didn’t know what to do. I was alone and had no one to talk to. I went home crying knowing that I will never be cured. I don’t know how much tears I had shed. I don’t know how many questions I had asked. Why should it be me? What have I done to deserve this illness? I was so worried. I couldn’t help to think of what was going to happen next. Shall I die soon? Shall I die in pain? Until when will I live? So many, many questions stuck in my mind. Questions I couldn’t find an answer. I wasn’t aware of this disease. Why does God explain it to me in such crazy way? Why?
It took me quite a while to accept my condition. I cried each day, each night, each minute. I was so weak, I was so scared. Will I be like this every day? Weak? Fatigued? I felt like I was battered inside out. I thought I could no longer do the things I wanted. I felt so pity for myself. Already I don’t know what to do. I felt so hopeless but I knew I need to be strong. I must endure the pain. I must be a friend with my sickness and fight for my life.
I started to bring back my enthusiasm; I tried hard to bring back my smile. I tried hard to push my tears away. And I realized that it wasn’t hard at all to do these. Eventually, I got back to my old self!
I decided to join a Foundation; I wanted to do this because I felt I was not the only one who has lupus. I wanted to meet people who were also suffering from this illness because I wanted to gain knowledge from their experience. But, upon seeing other lupus patients, I didn’t how to react. I didn’t know what to feel.
Should I be glad? Should I be sad? I felt so much sadness instead of gladness that day. I felt sorry for those who suffered so much hardship brought by the disease. I felt sorry for those who cried hard from so much pain. Some of them suffered from complications in kidney, lungs, liver, eyes, heart etc. Some became sluggish, some became partly blind, and some had to endure a lot of pain, discomfort, and hardship without a caregiver. I found my problems and experiences nothing compared to what they’ve been through. It was at this point when I realized I was in a far better situation than them. But still, it brought me so much frustration. I felt more scared than before. I was afraid that I will be experiencing the same stinging pain. I know that time will come, but question is, when is that going to come? How soon will it be? I need to be prepared because honestly, I am not yet prepared.
Maybe accepting my condition is really hard to do. Having said that, to say that I already accepted my condition is somehow untrue. There are times when I cannot help but cry, times that my smiles are all lies. But still, I’d like to pretend that I am happy and everything’s all right because when everyone else believes that I’m fine, I forget for a while that I’m not, and it helps!
Somehow, I feel fine.
Six years ago, I was diagnosed with Systemic Lupus Erythematosus: a chronic, autoimmune disease wherein the immune system mistakenly attacks the body’s tissues and organs. Lupus is incurable; I live with it the rest of my life, but can be managed through maintenance medication such as steroids and Plaquenil ….It scares me to think, however, that I have to depend on them for as long as I live otherwise I would suffer from all the symptoms.
The meds came with side effects; I developed a moon-shaped face and was losing big chunks of hair in high school. I became so vulnerable and short on self-confidence. I had big ambitions, but lupus took them away, that I only thought about getting a college degree sooner than later.
Lupus is a daily struggle. I get up in the morning usually with swollen joints, sometimes in searing pain that I can barely walk. When the meds wear off by the end of the day, arthritis comes back. The pain also shifts from moderate to severe whenever my doctors decide to taper off my meds. Coping with lupus includes painkillers. As much as I maintain a strict diet and do exercise, I cannot control the pain. Unrelenting pain and fatigue barge into my body without a warning. There were times that the only thing I could do was stare at the ceiling before going to bed and wonder if the next day will be less painful.
My doctors monitor my health condition through different lab tests every month….kaya nasanay na rin ako sa injection. Besides preparing for exams and reports for school, I also had to prepare myself for lab tests. Kakabahan na nga ako sa mga midterms at finals, kakabahan pa ko sa resulta ng lab tests.
Keeping up with school was grueling – heavy workload and pile of readings – but I tried to excel in my classes as much as I could. I did it to maintain my scholarship grant all throughout college that would help cover my medical expenses. I also did it because I wanted to prove something to myself and to those who see me as weak. Mama did not want me to continue with my schooling, but I felt the need to pursue the only goal I had left for myself back then.
This battle pushed me beyond my limits. I did not let lupus define nor consume me. I have filled myself with passion and determination to do things that I can still do. Living life may not be that easy, but I see every day as an opportunity to grow, learn, and accept the love and care of those around me.
I am truly grateful for my family and friends who were there for me and who never treated me like I’m a burden. Mama never gets tired of taking care of me and looking for alternatives to make me feel better; my best friend for constantly being my rock and for understanding everything that I go through. I appreciate my Dream Team friends who always got my back and would sacrifice their time to go with me for my monthly check-up. I am just so thankful to all those I’ve met along the way. You all lift me up ? God is so good, He reminds me all the reasons not to give up and helps me see that there’s still so much to be thankful for!
AB International Studies
Major in Development Studies, Minor in Gender Studies
Meet my ‘SuperwoMOM’
by Kathrina Yarza
October 28, 2013
original post: https://www.facebook.com/
When my mom was diagnosed with Lupus in 2000, she never obliged us to take care of her or accompany on her checkups and activities because we were so young then. I never really understood what she was going through until I saw her enduring her suffering just to attend to my needs and accomplish all the paperwork for my upcoming surgery back then.
My mom, Madeliene Lopez Yarza or Madge is selfless. She never buys anything for herself unless it’s on a bargain. Whenever she has extra money, she would always prioritize our needs, and set aside her own. I would often tell her to take care of herself first. There were even times that I would refuse her help and demand that she attend to her needs first. But she still won’t and that would really break my heart.
I’m just amazed at how my mom, a sick person, can manage to take good care of another sick person, whether it’s me or anyone in our family. Even my close friends and relatives also felt her tender love and care. She is often in deep pain but she knows how to ease away our own pain. My mom is truly my inspiration. Here, I share her heart’s desire to hopefully inspire others.
“Lupus is an autoimmune disease where the body’s natural defense or immune system attacks its own tissues instead of foreign substances like bacteria and viruses. It’s a chronic disease that causes inflammation — pain and swelling. It can affect the skin, joints, kidneys, lungs, nervous system and other organs of the body. Most patients feel fatigue and have rashes, arthritis –painful and swollen joints and episodes of both low and high grade fever. Lupus is the common name for systemic lupus erythematosus or SLE. There is no cure for SLE and it can be fatal.
I’ve been suffering from lupus for almost 14 years now, with complications from long-term use of steroids. I was diagnosed in late 2000, months after I gave birth to our youngest son. I had terrible joint pains in my hands, mouth soars, stomach pain, episodes of low grade fever, hair loss and very low blood count.
At first, I tried to endure all the pain, as I thought it was just arthritis and I was still too young for it. But later, I was forced to see a doctor when my hair started to fall. I could not eat because of oral ulcers and severe stomach pains that resulted to weight loss. Steroids were injected on my scalp to treat my hair loss but they were not effective. My stomach pains were unbearable so I sought a doctor who has enormous knowledge in autoimmune diseases. He had me undergo a series of laboratory tests. When the results came out, I was referred to a hematologist because I seem to have aplastic anemia. Thank God, it was not it. I then I went to a a rheumatologist, Dr. Esther Penserga who is like a mother to me. I had another series of laboratory tests and the result was positive; I have lupus.
It was so depressing. I don’t know anything about this disease. I kept asking myself, “Will I die soon? Paano ang mga anak ko?” I researched about it and it made me even more scared. But when Dra. Penserga encouraged me to join the Lupus Club at the Philippine General Hospital, I was able to understand and accept my disease. I became more at ease when I met people who are in the same situation. Learning about their experiences inspired me so much and gave me the strength and hope to continue moving on with my life. I was motivated to attend the regular monthly meetings to gain more knowledge about SLE. I learned how to live with it while taking care of myself.
Family members and caregivers are encouraged to join the meetings too, for them to understand what a lupus patient is going through and to know how they could give support. During those times, I would attend the meetings all by myself and I couldn’t help but feel envious of the other members who had someone with them. Dra. Penserga comforted me by saying, “Madge, if your environment can’t understand your disease, then get up and help yourself. Be strong and you can do it!”
Pain comes in all forms. How we manage our pain is up to us. The best way is to just push it through. I learned how to find strength and hope in all of my pain. I then realized that God has given me this trial for a reason. It was for me to understand and know how it feels to be sick. I have always dreamt of becoming a doctor when I was young, but we could not afford it. Maybe this is God’s way of granting my wish, that I am able to help the sick people in my own little way, despite my disabilities.
Having a chronic disease has never been a hindrance in serving God’s purpose for me. Being sick and taking care of my sick daughter is a blessing from Him. My physical, emotional and spiritual strength comes from Him.
I am not a superwoman but I believe that this inner strength may be one of God’s reasons why I am here – to love and take good care of His precious gifts – my children, Kcat, Talitha and Maro.
And if times comes that I grow old and weak, I wish that I will be in a home for the elderly, sharing my stories and making them smile.”
My mom is not a superwoman with super powers. But for me, she is a supermom with a powerful heart. If you have lupus like my mom, counseling and support groups such as the Lupus Foundation of the Philippines and the UP-PGH Lupus Club can help you go through the emotional issues involving this illness.
It tingles my heart. What I’ve gone through and what I am going through today is nothing compared to the pain and experiences of others. Those who are still in their hospital beds fighting for their lives, I believe they deserve this spot more than I do.
But yes, this lupus has changed my life. I was once a frustrated athlete. I used to run and play badminton. I used to go out and party all night. Until one day, I can no longer walk an hour. Then I began to lose my skeletal muscle mass and strength. Too weak to do the things I used to love. I was about to leave my job and stay at home instead.
Aside from losing my physical strength, I broke down emotionally and spiritually. Proverbial bad day or perhaps a rough few weeks as if you’re one breath away from the last straw. I sleep less than usual. More of emotional distress is looming large in my life. My mind was so cluttered with repetitive thoughts that something bad is going to happen. Self-hate, feeling of worthlessness, hopelessness, helplessness, and sometimes a suicidal thinking. I had difficulty coping with my everyday situation. I cried to sleep. My whole personal structure was melting.
And above all these, I lose my spiritual wellness. I feel being punished and singled out. I feel betrayed by GOD. I asked HIS intent and purpose. The feeling of “why me GOD” is real. I questioned GOD’s fairness. I may have sinned but to go through this? (Sigh)
But with the help of my family and friends who truly prayed and cared for my recovery I’ve been able to see the perfection of all that has happened. They all part of my journey. The sense of accepting and embracing whatever has happened in my life, realizing it is all an initiation into the deeper mystery of my infinite and unspeakably magical being.
Now here I am, starting to build a good come back. To bring positive difference. Hoping that my story will heal somebody else.
I am PAM DE GUZMAN, diagnosed August 02, 2015 with MIXED CONNECTIVE TISSUE DISORDER (Scleroderma + SLE).
By Joyce Reyes-Aguila
For all the grief and bad press that so-called Millennials (or people born anywhere from the ’80s to early 2000s) get, Millennial women are more likely to “interrupt their career for family,” according to a Harvard Business School alumni survey shared by New York Times columnist Claire Cain Miller in “More Than Their Mothers, Young Women Plan Career Pauses. ” In it, she wrote that “37 percent of Millennial women and 42 percent of those already married planned to interrupt their career for family…compared with 28 percent of Generation X women and 17 percent of baby boomers.”
These days, young mothers who have demanding careers will not think twice about scaling back work for the sake of their families. Millennial moms are finding ways to integrate their home life with their professional life, as Panorama learns from three busy mothers who have careers in the fields of public service, entertainment, and television/movie production.
So, how do Millennial moms get through the expectations and demands of all their roles?
Rep. Emmeline Aglipay-Villar
DIWA Party List Representative
A demanding legislative role used to take precedence for Democratic Independent Workers’ Association (DIWA) Party-list representative Emmeline “Em” Aglipay-Villar. She would attend every single affair she was invited to, travel around the country to visit projects, conduct activities for her organization, and speak with its members even during weekends. “I am a workaholic, and work has been a priority in my life,” she admits. “But I always knew that once I have a family of my own, it would have to be the priority.”
So when she and her husband, Department of Public Works and Highways (DPWH) Secretary Mark Villar, welcomed daughter Emma Therese in September 2015, the youngster became the center of their lives. “Mark and I are hands-on parents,” the lawyer and member of the University of the Philippines Order of the Purple Feather Honors Society shared. “I am a co-sleeping, breast-feeding, cloth-diapering kind of mom. I try to personally prepare Emma’s food (and) educational activities for her at home, bring her to play school, read her books…” Free time during the day is also spent with their child.
The first-time parents are learning to integrate family time with their work that, at times, requires attention even on weekends. Often, Emma joins her parents on work trips and enjoys the sights via an extra day. When the congresswoman is scheduled to visit DIWA bailiwick province Bohol, for example, the cabinet secretary would schedule infrastructure inspections in the area to get some work done at the same time.
“Emma and I have not slept apart since she was born,” the 10 Outstanding Young Men (TOYM) of 2012 for Public Service awardee said. “If I have to stay overnight somewhere, I would bring her with me (and) find a suitable place for her to stay.”
After each session day at the Lower House, Em gets home when their baby is about to sleep or is already asleep. “If she is awake, we shower together and do our nightly rituals like reading books and praying,” she says. “Mark also usually arrives when Emma is asleep already. In the middle of the night, he helps me change diapers.” To make up for his busy schedule, the secretary makes sure he spends the weekend with his family. And if work entails him to be away, Emma sees a lot of her dad through numerous video calls a day.
“These are just minor adjustments,” the legislator said. At present, she juggles her time with her congressional duties for DIWA and Las Piñas—Mark’s elective district where she is the designated caretaker, and her responsibilities when she was the chair of the Committee on Women and Gender Equality. Em is also currently busy with her Masters in Law studies, and advocacies such as the Hope for Lupus Foundation. Being a mom, she said, has not allowed her to work out daily or go to the salon regularly to get a manicure-pedicure. “Now, I am only able to cut my hair when people already bug me to cut it.”
“I do not feel bad about this. I choose to do all these things. I just face the challenges with a lot of positive vibes—always facing each day with a strong spirit and passion for my work, all the love in the world for my family, and a grateful heart. I’m just brimming with excitement for all these. Having love for what you do is the best way to get through the challenges, since you are able to bear the hardships that go with achieving your goals, whether personal or professional,” she added.
Recently, stress took its toll on Em, and she experienced a lupus flare. She had first manifested the symptoms of the autoimmune disease in 2007. She has had to cut down on her work, adding that she wants “to live long and be healthy for Emma and for Mark.” Her Hope for Lupus Foundation was founded to help patients who cannot afford treatment, and effectively diagnose those suspected to have the malaise. The congresswoman initially had second thoughts about establishing the foundation, scared that her illness would make people judge her unfit to be a public servant. But when she experienced complications in 2015 that almost made her lose her battle to the illness, Em decided to “lose no time in doing what (she had) always wanted to do.” She established the foundation, is writing a book, applied into her dream school, and continues to do everything possible to be a good wife and mom. For her, family always comes first. Villar believes in setting priorities in order, and training people so one can delegate tasks at work instead of “delegating your task as a mother to someone else.”
“Though I have always dreamed of becoming a mother, I only understood what it truly meant when I became one,” says Em. “I am still able to reach my general career goals while at the same time being physically present for Emma. I want to be the best mother that I can be and, if I should be forced to choose between my career and my child/children, I would always choose the latter. Nothing could be more important than them.”