This Foundation Gives New Hope for People with Lupus

A nonprofit organization aims to spread awareness and fund research on lupus.
By MARIA MILAGROS G. AUGUSTINES | JUL 16, 2017
Source: https://www.townandcountry.ph/people/philanthropy/foundation-gives-a-new-hope-for-people-with-lupus-a1802-20170716/?ref=article_related

In 2007, Emmeline Aglipay Villar received a devastating diagnosis. After noticing rashes and cystic acne on her face, she went to see her physician, who broke the news—she had lupus, an incurable autoimmune disease.
“I remember seeing my parents tear up as the doctor explained the condition. My mother asked the doctor with a trembling voice, ‘Doc, will Emmeline die?’ I laughed out loud then and said, ‘Of course not!’ even though I was unsure of the answer myself. Many Filipinos do not know anything about lupus. Most think that having lupus is a death sentence. It is not. Though at present there is no cure, people with lupus can overcome their disease and control it, like I did. But there are some instances when one is diagnosed too late and not much can be done to save the person’s life. This makes early diagnosis of the disease important.”

Villar, a three-term congresswoman and lawyer by profession, together with Melanie Cuevas and Lila Shahani, rheumatologists Dr. Paulo Lorenzo and Dr. Ging Racaza, and lupus awareness advocates Sidney Salazar and Nadine Bernardino co-founded the Hope for Lupus Foundation in 2016. The foundation is a non-profit organization that fights lupus through increasing awareness about the disease for early diagnosis and proper treatment, and by providing support to people with lupus and their families. The group also provides financial as well as emotional support to afflicted patients.

Villar hopes that timely information on the disease may allow others to recognize the symptoms and be proactive about seeking treatment. The group also hopes to go further by coordinating with other initiatives so that they can fund lupus research, improve lupus treatments for lupus, and possibly even find a cure for lupus in the future.

With the campaign, Villar hopes to reach people from all walks of life. “It’s important to make this information available not just to people who have access to the internet or television, but also to those living in the rural barangays. Our foundation seeks to educate barangay health workers, doctors in the barrios, and primary care providers about lupus and its symptoms,” she says. “We want to be able to facilitate their coordination with rheumatologists nearest to them. We believe this can significantly reduce deaths due to lupus.”

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

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.

The healing power of love

Since he will be on official trip to China this weekend, Public Works Sec. Mark Villar surprised his wife, DIWA Party List Rep. Emmeline “Em” Aglipay-Villar with a Mother’s Day big lunch at Annabel’s restaurant last Wednesday graced by media guys and what the couple called The Lupus Warriors composed of lupus patients like Em. “We will celebrate Mother’s Day as soon as I come back,” said Mark. “It will be a big family day.” According to a medical book, lupus is an autoimmune disease that causes swelling (inflammation) and a wide variety of symptoms. It affects each individually uniquely. Some people have only a few mild symptoms and others have many, more severe symptoms, among them: Fatigue, recurrent low-grade fever, rashes, itchy lesions in some areas of the body, discoloration in the fingers and toes, chest pains and shortness of breath, swollen painful joints, gastro intestinal problems, etc. “I have all those,” Em again reminded those present. “Lupus can be hard to diagnose because it hides behind various symptoms. Once you have it, you have it for life. All you can do is take medications to manage it.” As Funfare previously reported, Em was single when she was in her early 20s when diagnosed with lupus. She underwent chemotherapy. “Luckily,” said Em, “I didn’t have to undergo dialysis.” Entertainment ( Article MRec ), pagematch: 1, sectionmatch: 1 To hide the rashes on her face, she had to wear thick makeup. She said that she even hesitated to get married…

 

read more: https://www.aseanbreakingnews.com/2017/05/the-healing-power-of-love/

A RELEVANT SURPRISE BIRTHDAY PARTY FOR REP. VILLAR

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

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

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

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

 

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

Misis ni Sec. Villar, tuloy ang laban sa Lupus

By Lolit Solis

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

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

Rep. Em naiyaksa sorpresa ni Sec. Mark

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

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

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

PSN ( Article MRec ), pagematch: 1, sectionmatch:
Walang-wala sa isip ni Em na nagtipun-tipon sa restaurant ang kanyang mga kaibigan, ang Lupus Warriors at si Emma Therese, ang one and only daughter nila ni Papa Mark.

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

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

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

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

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

“Many people with lupus die because they were diagnosed when it was too late to do something about it, and more people die undiagnosed. If they had known the symptoms of lupus and received the proper treatment early on, their lives could have been saved, “ ang sabi ni Em.

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

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

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

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

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

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