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.”

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: http://lifestyle.inquirer.net/267836/rep-aglipay-villar-living-better-lupus-sharing-tips/

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