Love in the time of lupus

February 14, 2018 – 12:00am
MANILA, Philippines — So many stories on Valentine’s Day will refer to matches made in Heaven. Well, here’s one where one of the partners is living in a virtual Purgatory, suffering from an autoimmune disease that spells of sudden attacks of pain and immobility — but despite this unfortunate situation, we’re still talking about a relationship where the two partners are strong achievers in their own rights.
When DIWA Representative Emmeline Aglipay-Villar was first diagnosed with lupus, she was a fresh graduate from UP Law. At first, she ignored all her symptoms, from the stiffness she felt in her hands and ankles, to the swelling of her feet and legs. But one day, at about 2 a.m. — she could no longer move her hand. It was then that she decided to bring herself to the hospital. Her blood pressure was high. Her urine had protein and her hemoglobin was low. They needed to transfuse blood. Diagnosis revealed that she had glomerulonephritis, an acute inflammation of the kidneys. Even then, she still insisted on signing a hospital waiver that would allow her to leave, and still managed to submit the document required for the next day. For several years, this was the kind of work ethic Rep. Em has espoused; not once did she use her condition as an excuse.
It was this personal, solitary battle with lupus that led her to establish the Hope for Lupus Foundation — a non-government organization, which aims to promote the early detection and proper treatment of lupus by increasing awareness about it. Em thought that no one should have to battle lupus alone. Via information made readily available, referrals, moral support, and in special cases, financial assistance; Hope for Lupus’ mission is to make those afflicted aware that lupus is not a death sentence. Last year, Em collaborated with three rheumotologists and launched the Living Better with Lupus book — a guide to living full and meaningful lives even if suffering from lupus. Singers Selena Gomez and Toni Braxton are two examples of celebrities who have lupus.

The Hope for Lupus Run held at the Mall of Asia last month is another example of taking steps to stamp out the fear and ignorance associated with the disease. As is the “Lupus Butterfly Interactive Exhibit Tour,” which is being brought to hospitals and malls. A lupus fund was created with the Philippine General Hospital as partner. An art auction was held late last year to help kickstart this fund.
Em’s story is a story of perseverance and resilience. In 2010, she waged a successful nationwide campaign as representative of DIWA partylist. Since then, she has been fighting for women’s rights, gender quality and better labor conditions in the halls of Congress. It was during her first term that she met her present husband — Department of Public Works and Highway Secretary Mark Villar, who was then a Congressman himself.

Sec. Mark would admit that it took him one year to convince Em to go on a date. He was not her type. But the first date went well. Better than they both expected. After several dates, Em admitted to having lupus, removing both her wig and makeup. But at that moment, he knew this was the woman he wanted to marry. He didn’t mind the rashes, the hair loss, and the frequent visits to the hospital. He was ready for the doctor appointments. Mark knew lupus was going to be difficult to accept and live with, that there was no known cure. There was a high probability that Em would never bear a child.
But after they got married, he remembered praying to St. Therese, promising to name their first daughter after the saint should their wish be granted. A miracle happened and a few months after, Emma Therese was born. That was in 2016. Today, there still are days when Emmeline Aglipay-Villar feels the pain in her lower back and her joints. Some days, rashes still appear on her face and body. Em relies on the Ever Bilena Liquid Concealer and Matte Two-Way Cake to cover these blemishes, and laughs saying, “As Ever Bilena is such a staunch, major supporter of the Hope for Lupus Foundation, how can they not be my go-to cosmetics brand.”
At the aforementioned Hope for Lupus Run, Mark accompanied Em on the ceremonial 1k run that had victims of Lupus joining in and showing that life goes on, and in the case of the couple, even love can thrive, despite lupus.

Read more at https://www.philstar.com/lifestyle/fashion-and-beauty/2018/02/14/1787753/love-time-lupus#ZDUyUhq2aHvUKXAt.99

Ever Bilena supports ‘Hope for Lupus Run’

Posted by Megabites Team
Date: January 30, 2018
Source: https://www.megabites.com.ph/ever-bilena-supports-hope-for-lupus-run/

Ever Bilena, the country’s leading cosmetics brand in partnership with Hope for Lupus Foundation, is a proud supporter, with the Chamber of Cosmetics Industry of the Philippines (CCIP), of this year’s “Hope for Lupus Run” held last January 21 at the SM Mall of Asia
Lupus, a chronic autoimmune disease, causes the body’s immune system to become hyperactive and to attack normal, healthy muscles and organs. This leads to inflammation, swelling and damage to the skin, joints, kidneys, blood, heart and lungs.
The disorder is more common among women. Ever Bilena, with its large women clientele, is working closely with Hope for Lupus Foundation to promote early detection and proper treatment of the disease. The foundation logo is currently part of the uniform of Blackwater Elite, Ever Bilena’s official PBA team.
Photo on top shows Silliman Sy, Ever Bilena chief operations officer and Dioceldo Sy, owner and chief executive officer, wearing their “Hope for Lupus” shirt to show support for the cause.
To know more about Ever Bilena, visit www.everbilena.com.ph, and follow www.facebook.com/everbilenacosmetics.

Hope for Lupus Run’ on January 21

Hope for Lupus Run’ on January 21

Source: http://www.manilarepublic.com/hope-lupus-run-january-21/6675/

By: Gabriel

Ever Bilena, the country’s leading cosmetics brand, is a proud supporter, with the Chamber of Cosmetics Industry of the Philippines (CCIP), of this year’s “Hope for Lupus Run” on January 21 at the SM Mall of Asia.

The event is held in partnership with Hope for Lupus Foundation.

Lupus, a chronic autoimmune disease, causes the body’s immune system to become hyperactive and to attack normal, healthy muscles and organs. This leads to inflammation, swelling and damage to the skin, joints, kidneys, blood, heart and lungs.

The disorder is more common among women. Ever Bilena, with its large women clientele, is working closely with Hope for Lupus Foundation to promote early detection and proper treatment of the disease. The foundation logo is currently part of the uniform of Blackwater Elite, Ever Bilena’s official PBA team.

“Hope for Lupus Run” participants can join the 5k, 10k, or 21k race. Lupus patients can join the 1k butterfly warrior march.

Entry fee for the 21k race is P1, 000, inclusive of race bib, shoetag with RFID (radio frequency identification), race shirt, a “Finisher” shirt and medal. For 10k and 5k races, entrance fees are P750 and P650, respectively. The fee covers race bib, shoetag with RFID and race shirt. Fee for the butterfly warrior march is P350, inclusive of a race shirt and umbrella.

Registration is being conducted until January 14, 2018 at GNC stores, such as those in Trinoma, SM Megamall, SM Aura, Glorietta, SM Mall of Asia and Alabang Town Center.

Hope for Lupus Run

Published: January 21, 2018

 

The Hope for Lupus fun run at the Mall of Asia complex in Pasay City yesterday draws hundreds of runners and supporters of the initiative to spread awareness and understanding of lupus and individuals with the auto-immune disorder. Public Works and Highways Secretary Mark Villar and his wife, DIWA party-list Rep. Emmilene Aglipay-Villar led the participants of the activity which is likewise aimed at promoting early detection and proper management of lupus. (Manny Llanes|Manila Bulletin)

HFL turns 1!

You are all invited to attend HFL’s anniversary/Christmas party on December 3 (Sunday), 1pm to 5pm.

Costume: Butterfly

Please check our facebook event page for the final venue: https://www.facebook.com/events/179495325952174

Let’s Zumba!

Hello Lupus Warriors!! Let’s be active and healthy!! For the month of November, Let’s go and enjoy doing Zumba together! Sign-up now, planaforma makati can only accommodate 20 pax.

RSVP: https://www.facebook.com/events/1770107526622037

 

Hope for Lupus Run 2018

You’re all invited to join the Hope for Lupus Run on January 21, 2018. On-line registration is now open at http://www.pinoyfitness.com/2017/10/hope-for-lupus-run-2018-in-sm-mall-of-asia/

You can register on-line from October 15 to November 30. In-store registration at GNC stores from December 1, 2017 to January 14, 2018.

 

 

Save the date my beautiful lupus warriors! Our Hope for Lupus Run is finally pushing through next year January 21, 2018.

You’re all invited to join the Hope for Lupus Run on January 21, 2018. On-line registration is now open at http://www.pinoyfitness.com/2017/10/hope-for-lupus-run-2018-in-sm-mall-of-asia/

You can register on-line from October 15 to November 30. In-store registration at GNC stores from December 1, 2017 to January 14, 2018.

Please help us spread the word by sharing and reposting. Invite all your friends and family to join. This event is open to everyone. There is a 1k march for us lupus warriors who cannot walk or run very far bit there is also 5k, 10k and 21k for your friends and family who want a challenge. Let’s go!!!!

Lupus is no death sentence

By Alex Y. Vergara
Images by Noel Pabalate

For almost a decade, Rep. Emmeline “Em” Aglipay-Villar had kept a deep, dark secret, which only a few close friends and family members knew about. Villar was afraid that had she come out with it, people, especially her constituents, would think that she was weak and incapable of handling a demanding and stressful job.

But the wife of Department of Public Works and Highways Secretary Mark Villar eventually had a change of heart. Not only is the secret of her living with lupus out, the 35-year-old lawyer, politician, and mother to Emma, who turns two this September, even collaborated with a group of rheumatologists in writing a book on the mysterious, dreaded, and often-misunderstood disease.

“People keep asking me why only share it with the public now when I’ve had lupus for quite some time already,” said Villar, who was still single and working in a law firm when she was diagnosed. “I was hesitant to come out and start a foundation and be the face of those with lupus because of my position in government. I wasn’t sure how this would impact my work.”

Well, not anymore. Villar, together with Drs. Angeline Magbitang-Santiago, Evelyn Osio-Salido, and Geraldine Zamora-Racaza, wrote Living Better with Lupus (available at National Bookstore) in the hopes of providing those with lupus useful information and answers to commonly asked questions about the autoimmune condition, its symptoms, treatments, and even basic tips on what to indulge in and avoid in order to better manage it.

One such treatment, apart from occasional blood transfusions, is chemotherapy. Yes, the same chemotherapy resorted to by oncologists.

“But the dosage we use is different,” said Racaza. “Chemotherapy modulates the disease in the cellular level. But lupus is not cancer.”

What is it then? According to an online article on Medical News Today, “lupus is a chronic autoimmune disease in which the body’s immune system becomes hyperactive and attacks normal, healthy tissue. This results in symptoms such as inflammation, swelling, and damage to joints, skin, kidneys, blood, heart, and lungs. ”

“Lupus,” the article went on, “makes the immune system unable to differentiate between antigens (a substance capable of inducing a specific immune response) and healthy tissue. This leads the immune system to direct antibodies against the healthy tissue—not just antigens—causing swelling, pain, and tissue damage.”

Villar and two of her collaborators launched the book recently. As president and founder of Hope for Lupus, she also used the occasion to promote her seven-month-old foundation, which provides information, referrals, moral support, and even financial assistance to needy patients with lupus.

One of the foundation’s projects, in cooperation with the Department of Health, is to put posters about lupus, including its common symptoms, in the country’s numerous barangay health centers to disseminate awareness.

“I realized later on that the misimpression that lupus is a debilitating disease should be corrected,” she said. “For me and many others, having lupus isn’t a hindrance to leading full lives. A lot of people with lupus are not only achievers. They’re also able to do the same things they did prior to being diagnosed.”

Just like other people who have diabetes, high cholesterol, or hypertension, those with lupus can manage their condition with the help of qualified doctors and adequate medication, she continued. Although the disease isn’t a death sentence, as most people fear, its symptoms shouldn’t be taken for granted, either.

“When you ask if lupus is curable, you’re implying that the patient will no longer need treatment thereafter,” said Salido. “Unfortunately, that is not yet the case. In the meantime, there are medicines and treatments we can give to help control the lupus so that patients can live normal lives.”

Many lupus sufferers, like Villar, can even get pregnant and carry their babies to full term. But it was a very delicate pregnancy for Villar, which required her and the then unborn Emma to be constantly monitored.

But the overachiever and hyperactive future mother didn’t change her routine while she was pregnant, she stressed. In fact, Villar, a health buff who used to run marathons, was even exercising daily.

“The problem was the lupus was attacking my blood,” she said. “Since the fetus was also taking up blood, I had to undergo frequent blood transfusions.”

Worse, her antibodies were also attacking Emma. To neutralize those antibodies, Villar’s doctors regularly gave her immunoglobulin taken from the blood of thousands of people and later synthesized.

“Initially, the immunoglobulin was given to me monthly,” she said. “As my pregnancy progressed, it was given to me more frequently.”

Newborn babies of mothers with lupus are also susceptible to neonatal lupus or, worse, a blocked heart. Thankfully, Emma, a premature baby, had none of these conditions.

But her parents weren’t taking any chances. Apart from visiting a cardiologist regularly as part of her prenatal care, Villar made sure that other specialists were on standby when she was giving birth just in case something was wrong with Emma’s heart.

Villar and her collaborators were also clear about one thing: Lupus, if left unchecked, could kill! In the seven months since Villar established the foundation, for instance, three of its more than 500 members have passed on.

What are the basic things a lupus patient should avoid? Being out in the sun too long is bad for her. Not only does it aggravate her rashes, which are among the most common symptoms of lupus, sunbathing could also lead to skin lesions and unwanted inflammation of the person’s organs.

Since it’s an autoimmune condition, lupus, as stated earlier, attacks some of the body’s vital organs, especially the kidneys. Their inability to properly process blood and other fluids in the body, in turn, causes the person to bloat.

Other common symptoms associated with lupus are severe joint pains, splitting headaches, visible mouth sores, and debilitating fatigue. Since a person’s kidneys and immune system are compromised, she is advised by doctors to avoid eating salty food and staying in crowded places.

“In some cases, I’ve encountered patients na parang nasisiraan ng bait (as if they were going crazy). Some suffer from anemia,” said Salido. Going a bit crazy is probably not farfetched because lupus also sometimes attacks the brain.

We’re using “she” to refer to a lupus patient for a reason. Ninety percent of those who acquire it are women.

The type of fatigue a lupus patient may feel isn’t your ordinary, run-of-the-mill fatigue based on her moods or trips. When she says she’s tired, it really means she’s tired, said Racaza.

Such bouts with debilitating fatigue and high fever may signal the start of what many sufferers dread as a lupus “flare” after weeks, even months of remission. What usually triggers these flares are stress, both physical and psychological, long hours at work, and overexertion.

Villar remembers the time before she was diagnosed when she couldn’t get out of bed because of sheer fatigue. She was in the dark about it because as a “Type A person, I was used to pushing myself as much as I could and to excel in everything that I did.”

“It can also mimic the symptoms and manifestations of other diseases,” said Racaza. “Some dismiss it as a bad case of rayuma (rheumatism), while those with rashes think that they’re just suffering from some recurring allergy. That’s why it’s very important for doctors to pick it up early and refer patients to proper specialists for further testing.”

In Villar’s case, for instance, it took her team of doctors almost a year to diagnose her. Before they found out, she was misdiagnosed as suffering from such esoteric-sounding conditions as glomerulonephritis, thalassemia, and autoimmune hemolytic anemia.

Since lupus affects various organs, a patient is also referred to by her rheumatologist to see other specialists like a nephrologist (kidney specialist), hematologist (blood specialist), and cardiologist, among others.

Although daily maintenance medicine for lupus patients can cost anywhere from just a few pesos, to hundreds, if not thousands of pesos, depending on the patient’s condition, tests and attendant treatments needed to identify and manage the condition are quite costly. Yet, many Filipinos are still clueless about lupus.

“When I was diagnosed, one of the first things I did after seeing a rheumatologist was to go to the bookstore to see if I could find titles about lupus,” said Villar. “There were none.”

She suggested to the bookstore to stock up on such types of books, never mind if they were written abroad by foreign doctors because there was a demand for them. Nothing came of it.

In the meantime, she ordered books on lupus online. Instead of waiting forever for locally written books that would never come, Villar decided later on that “I might as well do it myself.” She went ahead to initially write it. When she discussed her book project with Salido and company, Villar asked them to co-author the book with her. They readily responded.

Said to be the first book of its kind in the Philippines,Villar and her co-authors are also giving readers of the book something books written abroad normally don’t, which is hope through stories told by Filipino lupus sufferers themselves.

“It’s a complicated disease,” said Villar. “Even doctors, based on my experience, make mistakes identifying it. Having this book would be helpful not only for patients, but also for those in the medical profession who need to understand lupus better.”

No sooner had their book been launched than Villar began thinking of writing an equally informative version of Living Better with Lupus in Filipino. This time, she intends to distribute the books for free, especially in rural areas.

Villar related a case in the province, which happened to the mother of one the members of her foundation. The poor woman was suffering from painful arthritis for the longest time. They all thought it was just ordinary arthritis resulting from all age. Soon enough, she was also having terrible headaches.

“When they brought her to the hospital, she was diagnosed with lupus,” said Villar. “But it was too late because the condition had already damaged her brain. This was just one case, but there have been a lot of similar cases. Having a handy reference material about lupus, and one written in Filipino would be very helpful.”

Living Better with Lupus is now available!

Living Better with Lupus is now available in both Fully Booked and National bookstores!!! Here is a list of branches where the book is available:
National Bookstore Branches:
SM Megamall
Filivest
SM BF Sucat
SM City Bicutan
SM Sucat
Southmall
Alabang
SM Las Pinas
Metropolis Mall
SM Muntinlupa
Greenhills
Cash & Carry Mall
Market Market
SM Aura
Greenbelt
Glorietta 1
Rockwell Powerplant
Mall of Asia
SM Valenzuela
Ermita
Harrison Plaza
Manila
Sta. Mesa
Tutuban
Victory
SM San Lazaro
SM City Taytay
Ortigas
Robinsons Pioneer
Shangri-La Mall
Fairview Terraces
Fisher Mall
Q Plaza
SM City Masinag
Ali Mall
Fairview
Farmer’s Plaza
SM North Edsa
Quezon Avenue
Sta. Lucia Mall
Superbranch – Cubao
SM City Marikina
Robinsons Metro East
Trinoma
Powerbooks Branches
Festival Mall
Megamall
Trinoma

*Book is located at the Health Section or New Title displays

 

Fullybooked

Gateway Mall
Trinoma
The Fort High Street
Mckinley
Century City Mall
Conrad S Maison
Rockwell Powerplant
UP Town Center
Greenbelt 5
Mall of Asia

 

Other Outlets
Bookazine Megamall
Christian Ventures Magazine Stand – NAIA Departure Terminals
Bufini Alabang
Bufini Makati
Bufini Rockwell
St. Lukes Bistro
Makati Medical Center PepperJack
Manila Polo Club – Saddlebrown

Fighting ‘flares’ with flair

By Jullie Y. Daza
Photos by JYD

Although it is usually described as a rare disease, lupus can attack anyone young or old. Its preferred targets are 90 percent women in their child-bearing years, between 20 and 40, and while it need not be a death sentence, living with the illness means lifestyle changes, visits to the doctor, and a large dose of optimism, “setting goals and working hard to accomplish them to keep us moving forward.”

That is the message of a very busy, very active 30-something Emmeline Aglipay Villar, Diwa party-list congresswoman, wife of DPWH secretary Mark Villar, and mother of 18-month-old Emma Therese. Her book, Living Better With Lupus, aims to reach patients diagnosed with the disease and those who have it but are baffled by it or do not know they have it.

With its wide range of symptoms, from butterfly rashes to psychosis, athritic pains and depression (usually caused by the loss of self-esteem) and other organs besides the kidneys which could be affected, “even doctors make mistakes” in diagnosis and treatment. Lupus “flares” comes in cycles with differing degrees of frequency and intensity or weakening.

  • Dr. Geraldine Z. Racaza and Rep. Villar share the stage with Emma Therese.

Emmeline started her Hope for Lupus Foundation three years ago to share what she has learned from her experience, which first came to light 16 years ago. She wanted to understand what was causing her feet to swell and her hair to fall, but instead of moping and feeling sorry for herself, she carved out her goal: to raise awareness and save lives with prompt and proper treatment.

Co-authored with Drs. Angeline Magbitang-Santiago, Evelyn Osio Salido, and Geraldine Zamora Racaza, the book is available at National Book Store. One hundred percent of its proceeds are earmarked for the foundation, which conducts exhibits, meetings and other activities.

At the launch, the foundation presented doctors and patients who talked about living life with lupus. Her friends and family were present to provide moral support, including more than a handful who know what she’s talking about, being survivors themselves. As the book puts it, “There is still no cure for lupus but its symptoms can be managed, and remission is attainable.” If Emmeline can do it, her doctors say, so can the others. Her story is an example of how one can conquer lupus and live a full and fulfilling life despite the illness.”