Watch Those Rashes, It Could be Lupus, An Incurable Disease

Hope for Lupus hopes to bring awareness to the importance of early detection and proper treatment of the chronic autoimmune disease.

By MARIA MILAGROS G. AUGUSTINES | JAN 18, 2018

Source: https://www.townandcountry.ph/people/philanthropy/hope-for-lupus-a1802-20180118

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.”

Emmeline Aglipay Villar and Dr. Geraldine Racaza, who are among the founders of the Hope for Lupus Foundation

 

Villar, a three-term congresswoman and lawyer by profession, together with Melanie Cuevas and Lila Shahani, rheumatologists Dr. Paulo Lorenzo and Dr.Geraldine 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.

 

On January 21, the foundation is staging the Hope for Lupus Run at SM Mall of Asia. The race aims to spread awareness about the chronic autoimmune disease that is often overlooked and misdiagnosed. There is a 1K march for those suffering from lupus as well as 5K, 10K, and 21K distances for the general public.

The first run will take place at 4 a.m. onward, and is presented by the Chamber of Cosmetics Industry of the Philippines, in partnership with Ever Bilena, SM Mall of Asia, and the Ayala Land Foundation.
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.”

Photo exhibit tells stories of courage, hope and lupus

By      The Manila Times     November 3, 2018

Hope for Lupus Foundation has launched a photographic exhibition named “Scarred but not Scared” featuring the photographs of four multi-awarded and acclaimed photographers Jose Antonio Aliling, Bien Bautista, Josefino Mario De Guzman, and Maria Victoria Manotok Arroyo.

The exhibit, which was held at at Greenbelt 5, Makati City, brought viewers closer to ordinary Filipinos who bravely show the triumph of their fighting spirit over the hardships thrown up by the auto-immune disease called Lupus. The exhibit also served as a tribute to all the friends, relatives, and patients who have fought bravely and has since passed out.

Founder of the Hope for Lupus Foundation, Department of Justice Undersecretary, and former DIWA Party-list Representative, Emmeline Aglipay-Villar has high hopes that with continuous education and awareness on lupus, everyone could create powerful interventions in whatever form it may be. The undersecretary believed that initiatives like the exhibit could bring out a strong voice that supports the advocacy, and eventually, a society that rallies towards a world without lupus—a vision that the foundation carries.

(From left) Geraldine Zamora, Christopher De Venecia, Silliman Sy, Secretary of Public Works and Highways Mark Villar, Department of Justice Undersecretary Emmeline Aglipay-Villar, photographers Josefino Mario De Guzman, Bien Bautista and Jose Antonio Aliling. PHOTOS BY GERARD SEGUIA

Hannah Grande, diagnosed with lupus at age seven.

Trisha Duncan a student, model and host is one of the subjects for the exhibit.

Aglipay-Villar (center) with the lupus warriors.

With the aim to raise awareness, ‘Scarred not Scared,’ is a photo exhibit featuring people with lupus and their stories of courage, hope and triumph.

Lupus, a systematic disease that affects multiple parts of the body, leads to scarring, destruction, joint pains, and deterioration of vital functions, among other known symptoms. It is also wherein a person’s immune system attacks its own tissues and organs, damaging various body systems like joints, skin, kidneys, blood cells, brain, heart, and lungs. Hope for Lupus aims to promote the early detection and proper treatment of lupus by increasing awareness about this mysterious condition.

Undersecretary Aglipay-Villar has been diagnosed with Lupus on 2007. It took several months and numerous tests before Aglipay-Villar confirmed that she was suffering from lupus. Auto-immune diseases like lupus make patients struggle in silence and Aglipay-Villar is not an exemption. Admittedly, she also shared how difficult it is to tell somebody that she has lupus as it is often perceived as a sign of weakness and there is always the fear of judgement or discrimination. With the exhibit, it bravely manifested not just the beauty of the resilience of Filipino lupus patients, but also, make visible the gravity of the disease.

“For those who seek to understand better, may this be the start of your journey for more enlightenment. And for those who carry the same cross, we hope for this to serve as a beacon of hope that amidst all the uncertainty and pain, there is always a smile that shines from within,” said Aglipay-Villar.

For a good cause

By: Regina Mae Parungao
Published October 17, 2018, 6:13 PM
The celebrities who support the cause are doing all they can but Justice Undersecretary Emmeline Aglipay-Villar knows increasing Lupus awareness needs all the help it can get.

Emmeline Aglipay-Villar (Photos by Manny Llanes/Manila Bulletin)

In line with the advocacy is “Scarred but not Scared,” an awareness exhibit facilitated by her own Hope for Lupus Foundation. The exhibit runs until Oct. 20 at Exhibit Hall of Greenbelt 5 in Makati, and features photographs from Jose-Antonio Aliling, Bien S. Bautista, Josefino Mario de Guzman and Maria Victoria Manotok Arroyo – all members of the camera club of the Philippines.

Emmeline is wife to Public Works and Highways Secretary Mark Villar. She was diagnosed with Lupus at age 25.

Some of the guests at the exhibit

“I think through this exhibit, people will get to understand Lupus more because the photos are very relatable. They will see the scars, they will see the vulnerable side of every (Lupus) warrior,” she explained.

Apart from the exhibit, Em authored two books, “Living Better With Lupus” and “Lupus Kayang-Kaya Ko ’To,” a comprehensive guide for patients and their families.

“Scarred but not Scared”

BY  · OCTOBER 9, 2018

“Lupus” is a lifelong illness wherein the body’s immune system on itself and attacks the body’s organs. This systemic disease can affect any part of the body, leading to scarring, destruction, joint pains, and deterioration of vital functions, among other known symptoms. Over 5 million people in the world have lupus, but because its symptoms mimics other ailments, there is an extreme lack of awareness and understanding about this condition. Such lack of awareness unfortunately leads to countless misdiagnoses and unnecessary deaths, which could have been prevented had more people been armed with the right information.
The Hope for Lupus Foundation, Inc., was born out of this necessity in 2016. It is a non-profit organization that aims to promote the early detection and proper treatment of lupus by increasing awareness about this mysterious condition. It also provides much-needed social support to patients and their families who are affected by the disease.
In partnership with 4 multi-awarded and acclaimed photographers – Jose Antonio T. Aliling, Bien S. Bautista, Josefino Mario De Guzman, and Maria Victoria Manotok Arroyo — The Hope for Lupus Foundation brings you, “Scarred but not Scared,” a photography exhibit that attempts to capture a glimpse of the lives of some of those who day-in and day-out continue to courageously endure their battles against lupus and claim their respective victories against its symptoms in whatever form they came. The exhibit also serves as a tribute to all our friends, relatives, and patients who have fought bravely and has since passed on.
For those who seek to understand better, may this be the start of your journey for more enlightenment. And for those who carry the same cross, we hope for this to serve as a beacon of hope that amidst all the uncertainty and pain, there is always a smile that shines from within.

Emmeline Villar Gives Filipinos Battling Lupus a Spark of Hope

The DOJ undersecretary did not let lupus get in her way of living the best life. She wants the same for others.
by Kitty Elicay . Aug 21, 2018
Source: https://www.smartparenting.com.ph/life/inspiration/emmeline-villar-lupus-battle-a00228-20180821

Emmeline Villar, who has been working in public service for 10 years, was diagnosed with lupus at 25 years old, but she did not disclose it to anyone in Congress where she was a DIWA party list-representative. She eventually revealed her secret to her future husband, Mark Villar, who was also a neophyte representative back then (he is currently the Secretary of Public Works and Highways).

Lupus is an auto-immune disease where a person’s immune system attacks its own tissues and organs, damaging various body systems like joints, skin, kidneys, blood cells, brain, heart, and lungs. When caught early, it is manageable, but it is life threatening to women who are pregnant. That’s why Emmeline’s doctors essentially told her to give up on pregnancy when she and Mark embarked on their life together as a married couple.

Emmeline, however, had defied the odds. While she did almost lose her life due to lupus complications when she became pregnant, she is now a proud mom to Emma, 2 years old. That new lease on life is what has inpsired her to help those who are suffering from the same disease.

On December 2016, Emmeline launched Hope for Lupus to give those with lupus a fighting chance at life and end the preconceived notions people had about the disease.

“I want to help people who are indigent and who can’t afford the treatment,” Emmeline shares with SmartParenting.com.ph. “Having lupus — it’s forever. And they don’t know who to turn to.”

Rep. Emmeline Villar launches Filipino version of Lupus book

By Iza Iglesias, TMT

Diwa Party-List Representative Emmeline Aglipay-Villar launched another book to help guide Filipinos living with lupus. Launched on May 20 at the Crowne Plaza Hotel, Quezon City, “Lupus, kayang-kaya ko ‘to!” is the abridged Filipino version of “Living Better with Lupus” which she published last year.

Written by doctors Angeline Magbitang-Santiago, Evelyn Osio-Salido and Geraldine Zamora-Racaza, the volume is an infographic booklet that is written in conversational Filipino and contains concise and basic information about the sickness. It aims to raise awareness about lupus especially in areas where there is no information available about it.

(From left) Geraldine Zamora-Racaza, Rep. Emmeline Aglipay-Villar, Health Secretary Francisco Duque 3rd, Evelyn Osio-Salido and Angeline Magbitang-Santiago)

”We are also launching our lupus poster which will be displayed in all health centers in the Philippines.
Awareness is the key to early diagnosis and saving lives and knowledge is the way to finding a cure,” Villar, who is also one of the founders of Hope for Lupus Foundation, enthused during the launch.

​During the event, Department of Health (DOH) Secretary Francisco Duque 3rd expressed his intentions to create a PhilHealth package for lupus patients and gave his commitment to include certain medicines for lupus, such as Belimumab and Hydroxychloroquine in the National Drug Formulary. This will be a big help to indigent lupus patients who cannot afford the medication for lupus. ​

The books are very personal projects of Villar, whose own condition she discovered 10 years ago as a young lawyer. She had been experiencing many of the symptoms of the disease for years before she was diagnosed, but because of lack of awareness about the disease, she was not given the proper treatment. When she was correctly diagnosed her kidneys were already damaged.

“Sometimes I think that I couldn’t do it anymore, but I thought of the people who are depending on me so I have to be strong,” said the representative who was joined by husband, Department of PublicWorks and Highways (DPWH) Secretary Mark Villar.

“Therefore everyday we have to keep going not just for us but also for the people we love. Many are telling me that I don’t look sick. That’s because lupus results in symptoms such as inflammation, swelling, and damage to joints, skin and even internal organs, the reason why people won’t see just by looking at us physically,” she added.

Turning emotional, the congresswoman continued, “Yes, this disease is hard, but it doesn’t mean we will be outdone by it. When I was diagnosed, the doctor told me that I may not have children because it’s prohibited. If I will push it, I might die.

“But now I have a daughter. The doctor was wrong to say that it is impossible for me to have a child. In fact, it is my daughter Emma who gave me life, strength and confidence. She is the reason why I get to continue on and face the challenges I go through. Of course, let us be reminded that God is always there who love us endlessly,” ended Villar.

DOH supports HFL advocacy on spreading awareness on Lupus

On May 30, 2018 Hope for Lupus Foundation reached another milestone as it launched the “Lupus, kayang-kaya ko ‘to!” book. This book is written in conversational Filipino with illustrations and photos to make it easy to understand and to be more entertaining to the readers. The thirty-three paged book contains basic information on what is lupus, i.e., symptoms, causes, treatment, coping with lupus, complications arising from lupus, lupus in children, lupus during pregnancy, and other frequently asked questions. This book is an abridged version of “Living Better with Lupus”. “Living Better with Lupus” is a comprehensive reference and self-help book about lupus, which was authored by Cong. Emmeline Aglipay-Villar, Dr. Evelyn Osio-Salido, Dr. Geraldine Zamora-Racaza and Dr. Angeling Magbitang-Santiago that was launched last July 2017 and is now available in major bookstores.

“Lupus Kayang-kaya ko ‘to!” is written and published with the intention of raising awareness about lupus in the provinces and rural areas and to help those with lupus and their families to cope with the illness. Aside from the book, the Foundation also made a poster containing basic information about lupus, its symptoms and the contact information of HFL. The poster will be posted in all health centers and government hospitals as well.

Following the book launch, the foundation signed a Memorandum of Understanding (MOU) with the Department of Health (DOH) for the free distribution of posters about lupus and the “Lupus, kayang-kaya ko ‘to!” book to different barangay health units, government hospitals and other DOH controlled health units. The DOH was represented by Sec. Francisco T. Duque III and the Foundation by Congw. Emmeline Aglipay-Villar, Founder and President of HLF; and the other authors –Dr. Evelyn Osio-Salido, Dr. Geraldine Zamora-Racaza and Dr. Angeling Magbitang-Santiago in the MOU.

The momentous book launch and signing of the MOU was witnessed and attended by the authors of the book: Congw. Emmeline Villar, Dr. Evelyn Osio-Salido, Dr. Geraldine Zamora-Racaza and Dr. Angeling Magbitang-Santiago together their families, friends, HFL incorporators, lupus warriors and some press people. Present during the book launch are Sec. Mark Villar with their daughter Emma Therese; Rt. Gen. Edgar and Mrs. Marinette Aglipay; Former Sen. Manuel Villar; Mr. Dioceldo Sy of Ever Bilena; Mr. Paolo and Ms. Camille Villar and HFL incorporator Melanie Cuevas.

The MOU with the DOH is a remarkable progress for HFL to realize its vision to have a world without Lupus by promoting early detection and proper medical treatment to help people win the fight against lupus.

Lupus, kayang-kaya ko ‘to!” will be available for free in all health centers and government hospitals all over the Philippines.

Melanie and Emmeline: ‘Hope For Lupus’ Crusaders

Julie Cabatit-Alegre (The Philippine Star) – June 19, 2018 – 12:00am

MANILA, Philippines — Melanie Cuevas was 11 years old when she had a retinal hemorrhage or bleeding inside the eye.
“Normally, someone with high blood pressure or diabetes would have that, but the doctors said that I was too young to have it at that age,” Melanie recalls. “So they tested me for high blood pressure, diabetes, and leukemia.”
The tests came out negative. The doctors were perplexed. The following year, she did not have any symptoms. Then the next year, she had joint pains. Her fingers and toes were swollen. The doctors thought she had rheumatoid arthritis, so she was given medication for that.
“When I was 16, I started to have falling hair. I was having these rashes, and I felt a shortness of breath,” Melanie relates. “A friend of my mom suggested that I should see a rheumatologist, who advised that I should get myself tested.” She was off on vacation at that time in the States, and it was there where Melanie got tested positive for lupus.
“Patients are often referred to rheumatologists, physicians specializing in diseases of the joints and muscles, who develop a sub-specialty in diagnosing and treating autoimmune diseases such as systemic lupus erythematosus (SLE),” Dr. Angeline-Therese M. Santiago of the UP-PGH Section of Rheumatology, explains.
SLE, also known simply as lupus, is an autoimmune disease in which the body’s immune system mistakenly attacks healthy tissues in many parts of the body, including joints, skin, and organs such as the kidneys, brain, heart and lungs. Thus, its signs and symptoms often mimic those of other ailments.
“Lupus is difficult to diagnose since its symptoms vary as it affects different parts of the body,” Dr. Evelyn Osio-Salido, head of Rheumatology of the Department of Medicine of UP-PGH, remarks. “We have patients with bleeding problems or low platelet count and you think it’s dengue. It could even sometimes manifest in changes in behavior or psychosis.”
Some common symptoms include unexplained fever, fatigue, loss of weight, painful swollen joints, skin rash or lesions, and hair loss.
“There is a lack of understanding about the disease,” Dr. Salido observes. “It’s not very common. It is often misdiagnosed or under-diagnosed. That’s why there’s a need to raise public awareness.”
Lupus, Kayang-Kaya Ko ‘To!, a 33-page illustrated booklet containing basic information about lupus, was launched recently by the Hope for Lupus Foundation, a non-profit organization that aims to promote the early detection and proper treatment of lupus by increasing awareness about the disease. Written in Filipino, it is an abridged version of the comprehensive reference and self-help book, Living Better with Lupus, which was authored by party-list Diwa Representative Emmeline Aglipay-Villar, together with Dr. Evelyn Osio-Salido, Dr. Geraldine Zamora Racaza, and Dr. Angeline Magbitang-Santiago.
The book contains basic information about lupus such as what lupus is, what are the symptoms, causes and treatment. There is a section about lupus among children, older people and among males. While lupus strikes mostly women of childbearing age, usually between 20 to 40 years old, men, as well as younger and older people can also develop lupus. While there is no known cure yet for the chronic disease, the goal of treatment is to relieve symptoms and minimize the damage it can do.
Lupus, Kayang-Kaya Ko ‘To! will be distributed for free by the Department of Health (DOH) in all health centers and government hospitals nationwide. “Building awareness is key,” DOH secretary Dr. Francisco Duque III remarked. “DOH has undertaken to lend its support with its network of rural health units for the Hope for Lupus Foundation in the distribution of this informational comic book.
It was Emmeline’s own personal experience with the disease that led her to establish the Hope for Lupus Foundation in 2016, together with fellow incorporators, rheumatologists Dr. Geraldine Zamora Racaza and Dr. Paulo Lorenzo, as well as fellow lupus warriors Lila Shahani and Melanie Cuevas.
For many years, Emmeline suffered many of the symptoms of the disease. By the time she was correctly diagnosed, there was already major damage to her kidneys. “The doctor said I could die if I insisted on having a baby,” she relates, “but he was wrong.” Married to Public Works Secretary Mark Villar, they now have a precocious little toddler named Emma, whom Emmeline says gave her the strength to live.
“I think for everyone with lupus, in the beginning there’s going to be a point that you’re going to feel low,” Cuevas admits. It’s been over 20 years since she was diagnosed with the disease. “It’s kind of a long time for me to have self-pity,” she says.
She has since graduated from the Ateneo University with a degree in Business Management and a Master in Business Administration from the Ateneo Graduate School. She has worked as a magazine editor and newspaper columnist. She designs jewelry and helps manage her family’s hotel business.
“What is frustrating sometimes for someone with my condition is, I may want to do more things, but there are days when I am feeling weak and I just have to listen to my body and not push it,” Melanie shares. “I have to admit, there are days when it’s not easy to be happy. But like everyone else, you just have to pick yourself up and just go about doing the things you need to do. I think what has helped me most is the support of my family and friends. I feel lucky. It’s about being able to manage my time and energy, about having a positive attitude and practicing gratitude.”

Read more at https://www.philstar.com/lifestyle/health-and-family/2018/06/19/1825738/melanie-and-emmeline-hope-lupus-crusaders#Z0MrdM13dg8m4bXt.99

Rep. Emmeline Aglipay Villar, nagsalita tungkol sa sakit niyang lupus; Dr. Geraldine Racaza, nagsalita rin

Napaluha si Diwa Representative Emmeline Aglipay-Villar sa launch ng Lupus, Kayang-Kaya Ko ’To, ang libro na magkakatulong na isinulat nila nina Dr. Angeline Magbitang-Santiago, Dr. Evelyn Osio-Salido, at Dr. Geraldine Zamora-Racaza.

Ginanap ang launching sa Crowne Plaza kahapoRepn, May 30.

(From left) Rep. Emmeline Aglipay Villar, DOH Secretary Francisco Duque III, at Dr. Geraldine Zamora-Racaza

Ang Lupus, Kayang-Kaya Ko ‘To ang pinaikli at Tagalog version ng Living Better with Lupus.

Si Villar ang founder ng Hope for Lupus Foundation.

Isa sa mga project niya ang libro na libreng ipinamimigay para magkaroon ang lahat ng sapat na kaalaman tungkol sa karamdamang kanyang taglay hanggang sa kasalukuyan.

Naging emosyonal si Rep. Villar nang ikuwento nito ang mga hirap na pinagdaanan dahil sa lupus, na sakit din ng popular singers na sina Selena Gomez, Lady Gaga, Seal, at Toni Braxton.

“Minsan, iniisip ko, parang hindi ko na kaya, pero iniisip ko lang na napakaraming tao na umaasa sa akin kaya kailangan natin na tatagan ang mga loob natin.

“Araw-araw, kailangan natin na kayanin, hindi lang para sa ating sarili kundi para sa mga minamahal natin.

“Marami ang nagsasabi sa akin na mukhang wala akong sakit dahil ang lupus, ang sakit na ’to, yung pamamaga sa loob ng katawan kaya hindi nakikita ang mga nararanasan, ang mga pinagdaraanan namin.

“Oo, mahirap ang sakit natin, pero hindi ibig sabihin na magpapatalo tayo sa Lupus.

“Nung ma-diagnose ako na may lupus, sinabi ng doktor ko na hindi na ako magkakaroon ng anak, sabi niya bawal.

“Kung pipilitin ko raw na magkaanak, ikamamatay ko pa.

“Ngayon, may anak na ako. Maling-mali siya sa sinabi niya na imposibleng magkaroon ako ng anak at ikamamatay ko.”

Patuloy niya, “Kung alam lang niya na nang dahil sa anak kong si Emma, hindi ko yun ikinamatay, ito pa ang nagbigay sa akin ng buhay.

“Si Emma ang nagbibigay lakas sa aking katawan at kalooban.

“Siya ang dahilan kaya nalampasan ko ang lahat ng paghihirap at mga pinagdaraanan ko sa buhay.

“Siyempre, isipin natin ang ating Diyos na walang hangganan ang pagmamahal at pagmamalasakit sa atin.”

Maliban kay Rep. Villar, naging sentro ng atensiyon sa book launch si Dr. Geraldine Zamora-Racaza.

Si Dr. Racaza ang misis ng negosyante na naugnay sa isang celebrity stylist.

Nagpaunlak siyang magpainterbyu sa entertainment press, pero naging maingat sa pagsasalita tungkol sa kontrobersiya na pinagdaanan niya.

Pahayag niya, “I’m okay. My daughter and I are okay.

“Many people are going through difficult times, like what Em said.

“Lahat naman tayo may krus, love, family, financial, so it’s just how we deal with it…

“And prayers, and hold on to your love ones.”

May mensahe rin siya sa mga single mother: “Stay stronger…”

Read more at https://www.pep.ph/pepalerts/cabinet-files/21937/rep-emmeline-aglipay-villar-nagsalita-tungkol-sa-sakit-niyang-lupus-dr-geraldine-racaza-nagsalita-ri#MopbqAzxopeBU5H2.99

HOPE FOR LUPUS FOUNDATION’S PHOTO EXHIBIT

https://www.isah.red/blog/2018/11/3/ec6gyenc5vgx1952vf99l2500by5dc

Scarred but not scared

Hope for Lupus Foundation founder DOJ Undersecretary Emmeline Aglpay-Villar cuts the ribbon to open officially Scarred but not Scared, a photo exhbit at the Greenbelt 5 exhibition area. With him are the supporters of the foundation and DPWH Secretary Mark Villar

Justice Undersecretart Emmeline Aglipay-Villar welcomes guests to the Scarred but not Scared photo exhibit

The Hope for Lupus Foundation held a photographic exhibition.“Scarred but not Scared” featuring the photographs of multi-awarded photographers Jose Antonio T. Aliling, Bien S. Bautista, Josefino Mario De Guzman,and Maria Victoria Manotok Arroyo. The exhibit hoped to bring closer to ordinary Filipinos the faces of those who triumphed in their fight to overcome the autoimmune disease called Lupus. The exhibit also served as a tribute to all friends, relatives, and patients that had fought bravely and has since passed on.

The Founder of the Hope for Lupus Foundation, Department of Justice Undersecretary, and former DIWA Party-list Representative, Emmeline Aglipay-Villar expressed high hopes that with continuous education and awareness on lupus, the foundation could create interventions in whatever form it may be. The undersecretary believes that initiatives like the exhibit could bring out a strong voice that supports the advocacy, and eventually, a society that rallies towards a world without lupus—a vision that the foundation carries.

Lupus, a systematic disease that affects multiple parts of the body, leads to scarring, destruction, joint pains, and deterioration of vital functions, among other known symptoms. If you have the disease, your immune system attacks its own tissues and organs, damaging various body systems like joints, skin, kidneys, blood cells, brain, heart, and lungs.

Aglipay-Villar was diagnosed with Lupus in 2007. It took several months and numerous tests before Aglipay-Villar confirmed that she was suffering from lupus.

Aglipay-Villar was diagnosed with lupus in 2007 but with medication and proper management of the disease she lives a normal life with husband Mark Villar.

“For those who seek to understand better, may this be the start of your journey for more enlightenment. And for those who carry the same cross, we hope for this to serve as a beacon of hope that amidst all the uncertainty and pain, there is always a smile that shines from within.” Said Aglipay-Villar.

Guests huddle at the Scarred but not Scared exhibit

Hope for Lupus aims to promote the early detection and proper treatment of lupus by increasing awareness about this mysterious condition.

“I think through this exhibit, people will get to understand Lupus more because the photos are very relatable. They will see the scars, they will see the vulnerable side of every (Lupus) warrior,” she explained.

Apart from the exhibit, she wrote two books, Living Better With Lupusand Lupus Kayang-Kaya Ko ’To, a comprehensive guide for patients and their families.

Scarred but not Scared was at Greenbelt 5, at the second-floor exhibit hall from Oct. 13 to 20  and will tour various venues across the archipelago.

The celebrities who support the cause are doing all they can, yet Aglipay-Villar knows that increasing Lupus awareness needs all the help it can get.

She is the wife of Department of Public Works and Highways Secretary Mark Villar.