Living better with Lupus!

Hope for Lupus Foundation launched its first publication entitled “Living Better with Lupus” written by HFL Founder Rep. Em Aglipay-Villar alongside with Dr. Angeline Magbitang-Santiago, Dr. Evelyn Osio-Salido, and Co-Founder Dr. Geraldine Zamora.

Content includes early diagnosis of lupus, types of lupus, problems with lupus specifically during pregnancy, and its available treatments.

The launching was held on July 15, 2017 at City of Dreams Manila.

Hope for Lupus thanks its partners and sponsors for making the event possible: Blackwater, Ever Bilena, and Ruby Jack’s Steakhouse & Bar.

Rep. Aglipay-Villar: Living better with lupus and sharing tips

Seven months after its launch, the Hope for Lupus Foundation, Inc. has come up with a comprehensive guide to help lupus patients and their families understand better and cope with the life-threatening disease.

“Living Better with Lupus” is a very personal project of three-term Diwa party-list Rep. Emmeline Aglipay-Villar, whose own condition she discovered 10 years ago as a young lawyer.

She is married to Public Works Secretary Mark Villar, with whom she has a 2-year-old daughter, Emma Therese.


It took time before Emmeline ascertained her condition, since the symptoms of lupus could be mistaken for other medical conditions. Worse, there are only few specialists handling lupus cases in the country.

The lawmaker said the aforementioned factors became her main motivation to publish the guide.


“After setting up the foundation, I already pitched the idea for a book,” she said in an exclusive interview with Lifestyle. “Many suggested that I talk about my own experience with lupus, but I wanted more than that. I don’t think people would really be interested (in my story) but (more in) something they can refer to. I wanted something that would be really useful.”

Life-long disease

Systemic lupus erythematosus (SLE) or lupus is a life-long disease in which the body’s immune system turns on itself and attacks the organs, mistaking them as foreign and harmful.

Common symptoms are the butterfly rash that appears across the cheeks and the bridge of the nose, shortness of breath, painful joints and muscles, frequent mouth sores, excessive hair loss, pale skin, fever and fingers that turn white or blue after exposure to the cold.

Many of the 15 chapters open with short introductions by Emmeline recalling her experience with the disease. Some chapters have notes written by other patients. “I did not experience all the symptoms, so I invited other patients to share their experiences,” said Emmeline.

“Living Better with Lupus” takes the reader into a friendly Q&A on how the disease affects various parts of the body. The 195-page book also deals with issues that patients and their families are likely to ask.

Emmeline had valuable assistance from three professors of rheumatology at the Philippine General Hospital. Co-author Dr. Angeline Magbitang-Santiago helped conceptualize and stage at the Cultural Center of the Philippines the Lupus Butterfly Warriors’ photo exhibit that highlighted the strengths of lupus patients.

Dr. Evelyn Osio-Salido has published a research paper on SLE, and Dr. Geraldine Zamora-Racaza is involved in various pro-poor voluntary medical efforts.

“This book could be their handbook… because not all the symptoms manifest at the same time,” Emmeline said, referring to patients and their loved ones. An initial 4,000 copies will be available in select National Book Store and Full Booked branches.

Emmeline noted that she wrote the chapter on dealing with lupus during pregnancy. She has a lupus complication called antiphospholipid antibody syndrome (Apas) where antibodies in the patient’s body mistakenly attack the fetus. This condition makes the pregnant woman with lupus susceptible to miscarriages and blood clots.

Emmeline said her obstetrician had to partner with a pediatric cardiologist when she was pregnant to ensure that the child she carried would remain safe. This meant regular ECGs for baby Emma when she was still in Emmeline’s womb.

Public Works Sec. Mark was then the Las Piñas representative when he and Emmeline met and fell in love. Emmeline did not hesitate to bare her condition to Mark before they married in 2014.

Emma, who was born a year later, did not have neonatal lupus when she was born. Emmeline, however, acknowledged that she and Mark continue to face many challenges because of lupus.

“Flares” or complications triggered by lupus would manifest at inopportune times, making Emmeline’s condition very unpredictable. Just last summer, she was supposed to join the rest of her family on a European trip after completing her finals for a masters degree in law.

But she was forced to stay in a hospital in Venice due to a flare. This one, however, felt nastier than previous attacks. Mark hastily left Manila to be with her in a hospital that did not have a rheumatologist.

“Mark was with me the whole time,” Emmeline recalled. “He sat beside me, never complaining. He really cared for me. It was a good thing my parents followed to take care of Emma.”

Emmeline said other lupus patients are not as lucky. One elderly woman’s family mistook her symptoms for arthritis and discovered her real condition only after an excruciating migraine.

Emmeline also knows of a domestic help who asked to be allowed to go on vacation in her hometown, not knowing that the long trip and the sudden change in weather would lead to death after a swimming excursion.

“That’s why it was so important to come up with a book that discusses lupus in the Philippine setting. When I was newly diagnosed, I didn’t have any reference material, just information on the Internet which is not always reliable. Also, some of the information are not written by doctors but by bloggers,” she said.

Hope For Lupus Foundation Inc. will launch “Living Better with Lupus” on July 15, 2-5 p.m., at Ruby Jack’s Steakhouse, UG/F City of Dreams, Pasay City.
Original Post:

Happy Birthday Kylie!

“I am blessed to have another year added to my life. Thank you for all the people who greeted me and continuously praying for me. If you would ask me how am I doing? I still feel depressed, experience failures and suffer from pain. Like everyone else, we all have our own problems and this should not stop us from reaching our goals in life. Living with Lupus is like a running car with no engine. IMPOSSIBLE but come to think of it, I have a disabled immune system where it destroys my own organs yet I Am STILL ALIVE!! A MIRACLE. There’s a reason why God still strengthens me and wants me to live. If Rizal (co-bday celebrant) awakened the masses with Cancer, I’d like to be a part of spreading Hope for Lupus. It’s not the end. I may have Lupus but Lupus doesn’t have me #21#birthday #June19 #lupusawareness

photo taken by Michael See Apeles#

Lupus Story: Tiffany Uy

“Lagi ka na lang naoospital ah.”
“Bakit parang lagi ka na lang pilay?”
“PWD ka? Ano ba disability mo?”
“If you’re so sick, why don’t you just stay home??”

In 2010, I was diagnosed with Systemic Lupus Erythematosus and life was never the same. When I entered UP I thought I could adjust to the stress and handle a minimum workload of 15 units. In my first year, I was in the student council, enjoyed doing projects, and joined my first rally. My sickness worsened and I was scared of telling my professors and classmates how sick I felt. I would go to school with bandages on my knees and ankles. As the semester progressed I gave up going to class because I could barely walk. I was losing a lot of hair and my body was always bloated because of the steroids and other medications.

From UP Manila I transferred to UP Diliman. I thought that I would succeed in living a normal life but I still continued to lag in my studies and was forced to drop subjects because I was flaring (active Lupus sickness) and couldn’t walk again. I was advised to enroll in the Open University but I was determined to take another semester. I took the risk of continuing my studies because I wanted to make friends and possibly live the regular student life.

People would continue to ask, “Ano plano mo after graduating?” I would feel shy and just tell them that my goal was to finish the semester with the regular load (low expectations). It was a lot of pressure to be named “Tiffany Uy” to be honest. I felt insecure and could only dream to be as awesome as Tiffy Uy (fangirling inside). Towards the end of each semester, my health would decline and I was too scared to talk to my professors. I was too scared to tell my friends. I would gradually just disappear from each class.

As more semesters passed, I learned to ask my professors if I could do extra work to make up for my absences. Although I was really embarrassed to ask for help, I got the courage to ask my friends to tutor me in subjects I missed out on. I asked for power points, seat works and kindly begged for the time to be tutored. Thank you to my friends who pushed me to get through each sem. Thank you to my tutors August, Kuya Lexter and Carlos.

Di ako nakuntento and I wanted to do more with my life so I ran for the student council (yes crazy si atey.) The responsibility of being in the council challenged me to improve my health and keep up with my studies. It was hella stressful but also fun and exciting. I want to thank 24th and 25th for inspiring me to be more patient and teaching me to work hard without expecting anything in return because we do it for NCPAG and UP with love.

Thank you to the staff of NCPAG and OUR. Thank you for always greeting me with a smile and being so helpful all the time. You the real MVP guys <3

Thank you to my teachers, Momma Carlos and Professors. Thank you for giving me second, third, and fourth chances. Thank you to Dean Mendoza and Ma’am Cuaresma for checking up on me and my health. Thank you for the advice and guidance to improve the services and projects of the council.

Thank you to my dorm fam who did not get tired of my rants and looked after me when I could barely get out of bed. I will miss you both my little sisters.

Thank you to Nath, Zai, Jude and Alwin who kept my heart whole when things fell apart. Thank you to Boom, Arvin, Dex, Jeannine, Kyle, Kakai, and Meera for being the biggest and best support system, and tolerating my weirdness. Thank you to IGNITE for showing me that I can make friends and grow as a person.

Thank you to all the new friends I gained and the old friends that stayed with me through the years. Will always value our friendship. <3

Thank you to my doctors especially Dr. Bernal, Dr. Rodriguez, and Dra. Rodriguez. I would not be alive today (literally) without your care. Thank you to all the nurses, med techs and health care personnel who made my Lupus life better with your services.

Thank you to my mother, father, and younger brother. Thank you to my extended fam from all over the world. <3 Thank you for allowing me to stay at the dorm when I had work to do. Thank you for bringing me to the doctor and hospital. Thank you for the support. We made it guys.

To Ralph, thank you for borrowing books from the library for me when I couldn’t walk. Thank you for going to school early to help me walk to class. Thank you for running from Bio to AS 3rd floor to pick me from class because I couldn’t go down the stairs on my own. Thank you for the love.

To all the good samaritans who offered to help me to go up and down the stairs. Thank you. To all the people who asked if I was okay. I did not want to feel alone. Thank you to the One looking after me from up there. When I felt the weakest, I found strength in You.

To all the P.W.Ds out there, I know we may differ in circumstances but I hope we don’t stop building bigger dreams for ourselves. Thank you for your stories of strength and perseverance. We are all strong <3

UP humbled me with experiences that further challenged my intellectual capacity, strength of character, and ability to persevere against all odds. We are trained to ask questions, engage our professors in healthy discourse, and are confronted with realities that help us understand the struggles of different sectors. We are shown that we have the ability to create our own opportunities and we learn to laugh at ourselves because we are a work in progress. UP shapes each of us to become leaders in the service of the university and the nation. Maraming salamat UP!

B Public Administration
Batch 2017
Cum Laude


Original Post:

LUPUS STORY: “My Lupus Journey” by Cecille Luna
Hi, my name is Cecille Luna 34 years of age. My battle with lupus started 13 years ago. To be exact, i was diagnosed with SLE in 2004 and eventually develop to Nephritis Lupus in 2006.
My battle with lupus is not the same with others, as our doctors said, There is no same case when it comes to lupus. It was my last year in college when i felt something was wrong with my body. I was in 4th year and as usual, it’s a busy and toxic year to everyone. Struggling just to graduate and get the diploma you wished for.
Feb 2004 when i came to realize that my body is not responding with my thoughts. I always feel as if was drained even when just waking up in the morning.
At first, I just simply ignore it like when i’m also ignoring my sun sensitivity. I got reactions from my skin with the cream that I’m putting on my face. But then I started to notice something such as bruises in my body. My mother started to worry especially she sees my hair literally easily falling down. A day after, my body is in deep pain. I don’t want to be touched or moved. I just want to lay down like that. My joints and muscles are aching. I have a high fever and mouth sores. I’m burning inside, that’s how i feel. The next morning when I got a little better, my mother and i went to UST Hospital for check-up. My doctor requested for a lot of lab tests but definitely, they already had an idea what it is going on with my body. To make the story short, when the results were released, i was diagnosed with SLE.
I didn’t have a drama moment that time. I simply ask what was that. Is it a terminal case? I remembered ex-president Marcos died with that disease. Am i dying? My doctors explained but it was hard for me to understand my condition. Nevertheless, I was blessed because at least, I found a right doctor at the right moment. I was diagnosed at the early stage.
Life goes on as they said. I finished my study and graduate in time. Work and live a life as normal as i can. Until the wolf inside of me strike again.
September 2006. One morning i woke up that my head is like about to explode. My mother rushed me to the hospital to the emergency and contact all my doctors. This is what my Mother told me as during that moment, im already a lost soul. She said that I undergo MRI to find out what is happening. They saw that my memory bank (brain, left side) is full of bacteria. What i am experiencing is a brain abscess as they said. On that moment they rush me to the operating room. I woke up 2 days after. I lost all my memory. It was all drained.
My family, friends, doctors, they are all happy for the successful operations. My doctors assured me that my memory will come back in time but it will not be the same like before. There is a lapse moment when im tired. A lot of brain fog.
Keep moving! I was back to action. I work and do the things that made me happy. Live a life as normal as i can. In 2013 i decided to work abroad and i did it.
After 2 years i came back here in the Philippines. Then my wolf kicked me again. Feb 2016 and I was experiencing the hardest days of my life. I just recently lost my father. And i broke up with my 7-year relationship. Stress, lost, emptiness, and depression they are all over me. I just want to rest
That night my mother checked me in my room. she saw me shaking and vomiting. I was rushed to the hospital. I was having brain seizure. My brain was blackout for 2 days. As if your world stopped while others are moving. You’re physically there but your spirit is not. Then you come back to life from nowhere. That’s me!
Now i am okay. Alive and kicking. I don’t know how to tell story like others do. I just tell you how i can remember it and how i can relay it.
What i learned in this battle with lupus is simply like this: “what doesn’t kill you makes you stronger” Everyday that im still alive i know i am stronger. It’s not yet my time. God has given me this condition because He knows I can handle this. The new journey and adventure are on my way.
I am blessed aside from this condition. I have a loving family, friends, doctors, co-luppies support.
“No one has ever seen God; if we love one another God abides in us and His love is perfected in us.” 1John 4:12
I am a survivor and a keep fighter!
God bless us all!


by Raquel Apachecha
It was summer of 2006 when I started to feel something was wrong. I began losing my hair for no apparent reason. I had rashes all over my face and arms. I had pain all over my body especially in my joints that become severe whenever I was tired. That time, I’m in my 2nd yr in College and doing a part time job at the same time. I thought everything was just because of stress. Going to work in the morning, schooling at night. I always felt exhausted and weak.
One day, I woke up feeling sore, feverish and gasping for air. I can’t breathe well. My lungs and chest were like on fire and I felt like I’m dying. I was rushed to the nearest hospital and treated by different doctors, but none of them gave me the right diagnosis. Later on, the butterfly rash became evident on my face with accompanying sores all over mouth then the real verdict finally came YOU HAVE LUPUS.
I was caught unprepared and unaware of what was happening to me. Upon hearing the unfamiliar term, don’t know how to react. Lupus, I have Lupus. This means that my body’s natural defense system or my immune system attacks healthy tissues instead of attacking only things like bacteria and viruses and this cause Inflammation. “Me against my own.” Yes, weird as it may sound but this is what happening to my body. I’ve been into many chemo therapy procedures and steroids treatment in order to shut off my Lupus. Hospital became my second home. The four corner of my room was the only witness of my wailing night. I cried whenever I see my hair pulling down and slowly getting bald. I cried because of pain and loneliness. I cried because I knew I’m going to die. I cried because I’m I can’t accept the fact that everything will never be t he same. I cried because only thing I can do that moment was to cry.
Years passed, crying have slowly changed into a I cheerful smile and a thankful heart. I learned to accept my sickness. I learned to love what was left for me. Most importantly, I learned to love my family more. They became my strength and my reason not give up, I am surrounded with so much love even at times I’m difficult to handle.
Looking back now, I can see that my battle against Lupus has made me a better, stronger, and tougher. It brought me into a deeper relationship with God . It made me realize that life is too short to spent on evil thoughts. No more questioning God why it has to be me but instead I learned to value life and caused me to have a positive outlook.
I derived a lot of comfort from the passage of the Bible, knowing that after all was said and done, agree all the pain and struggle, after all the sufferings, God prepared a better place for me. This place is called heaven. In heaven, there is no more sickness and pain, no more crying and sorrow, no more death. Only joy, peace and love endures forever.
I will never know what is in store for me but I learn to commit myself to God for He alone has good plans for me, He does not wish to harm me, He plans to give me hope and a future. (Jeremiah 29:11)
Meantime, let me live and enjoy life with those I love and savor every bit of happiness while it last.
This Is The Story of The Lost Girl
My Name is Kelai
Lupus Warrior
*You may share your lupus journey by submiting your story to

Patricia Javier spends birthday with lupus patients

Patricia Javier (left) and Lucy Torres-Gomez —PHOTOS BY ISRAEL VIDAL/HFL FOUNDATION

Patricia Javier (left) and Lucy Torres-Gomez —PHOTOS BY ISRAEL VIDAL/HFL FOUNDATION

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.

Mark Villar gives wifey ‘queen treatment’ on b-day

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. #


Mark Villar gives wifey ‘queen treatment’ on b-day

Patricia Javier celebrates birthday with lupus patients

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.

Lupus Story: “A Light in the Midst of Darkness!”

“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.