Lupus Story: Erika Valdueza

I would like to share my story especially to those who have already lost hope in reaching their dreams because of rejections, discouragements, and illness.

Six years ago, I dreamed of becoming a planetary scientist. I know that such dream is unusual in the Philippines. Because I was young and idealistic then, I still entered graduate school in UP Diliman, hoping that I can receive support and encouragement from my professors. Unfortunately for the next 2 years, I only received rejections and discouragements. One of them even told me that I was born in the wrong country for this dream. Disheartened, I quitted graduate school and decided to work in the industry. Two years after, I received a scholarship to study in Europe and communicated with a professor who will help me pursue a research thesis related to planetary science. When I was about to reach this dream, I got sick. I never expected that I’ll acquire a chronic illness. No one in my family has or had Lupus.

 

I was diagnosed with SLE with Stage 4 Nephritis in September 2015 when I was about to start my thesis. It was a shock to me and to my family. That was also the first time I heard about Lupus. Despite this very sad situation, I am very grateful to God that He was able to bring my dad and my boyfriend to take care of me while I underwent blood transfusion and chemotherapy for 3 months in Europe. It’s very hard to get sick in a foreign country, but I’m thankful that God provided everything – from people to finances – to help me fight and survive. After my chemotherapy, I returned to the Philippines to recover, but still tried to do my thesis whenever I have the strength. I was advised to rest and recover for one year (which means I need to stop my studies for a year!), but by faith I said I don’t need to rest for a year. I won’t let an illness stop me for reaching my dream. And so after only 2 months of rest in the Philippines, I went back to Europe on my own to finish my thesis while I took care of my health. By March, I learned that my Lupus was already in remission and my kidney function has greatly improved. Early last month, I defended my dream research thesis and finally earned my MSc degree. I am now back in the Philippines for full recovery.

Life will definitely bombard you with problems and even illnesses to stop you from reaching your dreams. However, as long as you keep a positive outlook in life despite the adversity and you strongly believe in Him, nothing is impossible. I survived and recovered quickly because of the love and support of my loved ones, strong faith, and prayers. So to people who have chronic illness and to those who are discouraged and rejected, don’t ever lose that hope. Keep fighting and no matter what the circumstances are, believe that there is someone up there who will take care of everything for you.

To God be the glory!

To the stars!

 

Check Erika’s original post here

Share your Lupus story and e-mail it to info@hopeforlupus.org.ph

Misis ni Mark Villar may advocacy sa kanyang sakit na Lupus

Misis ni Mark Villar may advocacy sa kanyang sakit na Lupus By Lolit Solis (Phil Star)

Published on November 29, 2016

Read original article

Tungkol sa Lupus disease ang advocacy ni Diwa Party-list House Representative Emmeline Aglipay-Villar, ang loving wife ni DPWH Secretary Mark Villar.

May Lupus si Mama Emy kaya ‘yon ang napili niya na advocacy. Pareho sila ng young American star na si Selena Gomez na may lupus kaya bakasyon muna ito sa entertainment scene.

May plano si Mama Emy na humarap sa mga miyembro ng entertainment press para ipaliwanag ang advocacy niya at magkaroon ng sapat na kaalaman ang madlang-bayan tungkol sa karamdaman na naging sakit din ni late President Ferdinand Marcos.

DIWA Rep. Emmeline Villar nananawagan sa mga artistang may Lupus na lumutang

DIWA Rep. Emmeline Villar nananawagan sa mga artistang may Lupus na lumutang By Vinia Vivar (Pang Masa)

Published on December 2, 2016

Read original article

Hindi pala biro ang hirap na pinagdaanan ng asawa ni Department of Public Works and Highways (DPWH) Secretary Mark Villar na si DIWA (Democra­tic Independent Workers Association) Representative Emmeline Aglipay-Villar sa kanyang sakit na Lupus na nagsimula noong dalaga pa siya.

Humarap sa press conference si Rep. Villar kahapon para sa kanyang itinayong foundation, ang Hope for Lupus na magkakaroong launching ngayong Dec. 4 at the Cultural Center of the Philippines.

Walang gamot sa sakit na Lupus at nakakamatay din ito pero si Rep. Villar ang living testimony na pwedeng maka-survive at bumuti ang kalagayan lalo pa nga’t may makabagong medicine na raw tayo dito.

“The reason why I started this advocacy for awareness about Lupus is because I have Lupus myself,” simula ni Cong. Villar.

Na-diagnose siya ng Lupus noong 2007, when she was 25 years old at talagang dumating sa puntong puro pantal ang kanyang buong katawan na napaka-painful daw, halos hindi na rin daw siya makalakad dahil namamaga ang kanyang mga tuhod pati na ang mga paa, baywang, at likod. Hindi siya makahiga, hindi makaupo nang maayos dahil masakit daw talaga. Pati mga daliri raw niya ay na-deform at hindi na rin siya makapagtrabaho.

I started losing my hair. It started na kasing-laki lang ng pencil eraser na bilog-bilog. Then, it became like parang size ng cookies or size ng baso, then it became na magkakatabi na sila na ganu’n hanggang sa natira na lang sa hair ko, konting-konti na lang. I had to wear wig,” kwento niya.

Pati ang kidney at heart niya ay naapektuhan na at marami pang parte ng kanyang katawan. Pero dahil na rin siguro sa by nature ay isa siyang strong woman, she was able to cope with everything and live her life as normally as she can.

“Sabi naman ng doctor, it’s manageable. I just need to stay away from stress, that’s one, stay away from the sun, that’s another. ‘Pag na-expose ako sa sun, bumababa ‘yung platelet ko. Niloloko nga ako parati ni Mark na bampira raw ako,” kwento pa niya.

Right medication at healthy lifestyle raw ang ilan sa dapat gawin ng may sakit na Lupus at ito ang nais niyang ipaalam kaya itinatag niya ang Hope for Lupus.

To raise awareness about Lupus, first is the identification of the diseases and for proper treatment of those who have it. Second is to provide support to people with Lupus and their families. And then, third is to help connect rheumatologists to family practitioners and barangay centers because usually, when people go to their family doctor or to the barangay health center, or even to the ER (emergency room), they can refer them to the right people.”

In the future ay balak din daw nilang tumulong sa pagpapaaral ng mga gustong maging rheumatologist dahil konti lang daw ang may ganitong propesyon dito sa Pilipinas.

“But our foundation is mainly for awareness about Lupus,” she said.

Sa showbiz ay wala pa raw siyang alam na celebrity na may Lupus na makakatulong pa sana lalo sa kanila to create awareness.

“I hope na nga someone who has Lupus would step up and help me in this advocacy because I really want to raise awareness about Lupus and I hope, if we get the funds, we can do massive campaign about it like on TV and social media,” she said.

Sa launching on Dec. 4 ay magkakaroon din daw sila ng exhibit entitled Lupus Warriors and a musical play entitled Mabining Mandirigma by Nicanor Tiongson in partnership with the University of the Philippines- PGH’s Rheumatology Department. All proceeds with be given to the Bridging Lupus Fun for the benefit of indigent lupus patients in PGH.

REP. EMMELINE VILLAR, MAS BAGAY NA TV HOST

REP. EMMELINE VILLAR, MAS BAGAY NA TV HOST By Aster Amoyo (Journal Online)

Published on December 3, 2016

Read original article

MARAMI ang nagsasabi na ang  misis ni DPWH Secretary Mark Villar na si Partylist representative Emmeline Aglipay-Villar ay mas bagay maging talk show host kesa isang congresswoman.

Sa isang presscon recently na ginanap sa Ka Tunying’s in Timog Avenue, Quezon City para sa foundation na itinatag niya na may kinalaman sa sakit na lupus, pinahanga niya ang entertainment media hindi lamang dahil sa kanyang pag-amin na siya’y maysakit ng lupus kundi dahil napaka-articulate nitong magsalita.  Hindi naman ito kataka-taka dahil isa siyang abogada.

Bukod sa pagiging anak ni dating PNP Chief Edgardo Aglipay, si Congresswoman Villar ay first cousin ng yumaong matinee idol na si Rico Yan.

Ang ina ni Cong. Villar at ama ng yumaong actor ay magkapatid making them first cousins.

Taong 2007 nang magkasakit ng lupus si Cong. Villar, isang sakit na kung sa iba ito dumapo ay mawawalan na ng ganang mabuhay.

Bukod sa nalugas ang mga buhok ni Cong. Villar, hindi umano kaaya-aya ang kanyang mukha at buong katawan dahil pantal-pantal ang mga ito at namaga umano ang mga kamay at paa  dahil apektado na umano ang iba’t iba niyang vital organs sa katawan.

Ganunpaman, naging matapang ang kongresista na harapin ang  dumapong sakit sa kanya,

Natuto umano siyang gumamit ng wig.

Nakilala ni Cong. Villar ang kanyang mister na si Sec. Mark Villar sa Kongreso. Pero inamin nito na sa simula ay walang gaanong atraksyon ang Cabinet secretary sa kanya. Gayunman, naging matiyaga raw ito sa panunuyo sa kanya.  At ang maganda pa, tinanggap siya sa kabila ng kanyang naging karamdaman.

Bago pa man daw sila naging magkasintahan ay sinabi na niya kay Sec. Villar na baka hindi sila magkaroon ng anak dahil sa kanyang sakit. Pero tinanggap siya nito nang buong-buo.

At ang maganda, biniyayaan ang mag-asawa ng isang anak na babae na itinuturing nilang `miracle baby’.

Kung titingnan ngayon si Congresswoman Emmeline Villar, hindi aakalain na dumanas ito ng matinding challenge sa buhay. Malaki ang naitulong sa kanya ng positibong pananaw.

Pumayag kaya? Angel napiling gumanap na may lupus!

Pumayag kaya? Angel napiling gumanap na may lupus! By Nora Calderon (PhilStar)

Published on December 6, 2016

Read original article

Puwedeng artista si DIWA Representative Emmeline Aglipay-Villar kaya sa chikahan niya sa entertainment press, natanong siya kung sakaling gustong gawing movie ang love story nila ni Department of Public Works & Highways Secretary Mark Villar, sino ang gusto niyang gumanap sa kanya.  Wala raw siyang masyadong kilalang artista dahil hindi siya nakakapanood ng sine, pero gusto raw niya si Angel Locsin.  Eh, sino si Sec. Villar, pwede na raw si John Lloyd Cruz.

Sa kabila kasi ng busy work ni Rep. Emmeline, itinatag pa niya ang Hope for Lupus Foundation na ini-launch na niya noong Sunday, December 4 sa Cultural Center of the Philippines (CCP).  Ikinuwento ni Rep. Emmeline kung paano siya dumanas ng hirap nang dapuan siya ng sakit na Lupus o autoimmune disease wherein the immune system attacks healthy cells and tissues.  Matagal daw bago na-diagnose ang sakit niya pero ipinagpapasalamat niya ang suporta sa kanya ng mga mahal niya sa buhay, para malabanan niya ito.  Si Sec. Mark ang nagbigay ng malaking encouragement lalo na nang pakasalan siya nito kahit alam nilang pwedeng hindi na sila magka-anak.

Pero pinakinggan ng Diyos ang kanilang dasal dahil ngayon, may one year-old daughter na sila.  Lalong masigasig sa kanyang foundation si Rep. Emmeline dahil gusto niya talagang magkaroon ng isang Lupus-Free Philippines.  Sa lahat ng gustong tumulong, ipadala lamang ang inyong donations sa Bridging Lupus Fund for the benefit of indigent lupus patients sa Philippine General Hospital.

Dahil sa sakit na lupus, Rep. Villar ‘di inasahang magkakaasawa

Dahil sa sakit na lupus, Rep. Villar ‘di inasahang magkakaasawa By Jun Nardo (PhilStar)

Published on December 2, 2016

Read original article

One for the books ang nangyari sa personal na buhay ng DIWA (Democratic Independent Wor­kers Association) Party List representative na si Emmeline Aglipay-Villar, asawa ni Public Works Secretary, Mark Villar.

Imagine, 2007 nang ma-diagnose siyang may sakit na lupus, isang auto-immune disease. Pero bago ‘yon, dumanas siya ng katakut-takot na hirap sa katawan at hindi niya inakalang malalampasan niya ‘yon.

Ikinuwento ni Atty. Emmeline ang nangyari sa kanya bago naging maayos ang kalagayan at hitsura. Pampelikula ang istorya niya, huh!

Dumating nga sa puntong ayaw na niyang mag-asawa. Una ay dahil baka hindi siya magkaanak. Kaya naman daw nang umaligid sa kanya si Sec. Mark nu’ng magkasama sa Kongreso, inayawan niya ang anak ni Senator Cynthia Villar.

“Sino ba ang lalaking ayaw magkaroon ng anak. Pero persistent si Mark at napakabait na tao. Thank God dahil nang sabihin sa akin ng doctor ko na puwede akong magkaanak, lumabas ang first baby naming si Emma,” saad ni Atty. Villar nang humarap siya sa media.

Dahil sa sakit na lupus, ilu-launch niya ang Hope for Lupus Foundation ngayong December 4 sa Cultural Center of the Philippines. Magkakaroon ng exhibit na Lupus Warriors at isang musical play na Mabining Mandirigma ni Nicanor Tiongson ka-partner ang University of the Philippines – PGH Rheumatology Department.

Isa itong steam-punk dance musical tungkol sa buhay ni Apolinario Mabini. Gaganapin ito sa CCP, 3:30 p.m. at lahat ng proceeds ay ibibigay sa Bridging Lupus Fund para sa mahihirap na pas­yente ng lupus sa PGH.

Si Atty. Emmeline ay isa sa anak ni Gen. Aglipay at first cousin ng namatay na si Rico Yan.

Under medication pa rin siya at umaasang lala­wak ang public awareness ng mga tao sa lupus after ng launching ng foundation.

Miss ni Mark Villa papa sang talk show host

Miss ni Mark Villa papa sang talk show host By Lolit Solis (PhilStar)

Published on December 2, 2016

Read original article

Incurable pala ang sakit na Lupus at ayon ito kay Diwa Party-list House Representative Emmeline Aglipay-Villar na nag-share kahapon sa entertainment press ng mga karanasan niya.

Si Mama Emmeline ang loving wife ni DPWH Secretary Mark Villar at hindi niya inililihim na Lupus ang kanyang karamdaman.

Ang husay-husay magsalita ni Mama Emmeline kaya naipaliwanag niya nang malinaw ang kanyang advocacy, ang magkaroon ng public awareness tungkol sa Lupus at matulungan ang mga kababayan natin na may ganoong karamdaman.

Papasa na talk show host ang misis ni Papa Mark dahil klarong-klaro ang kanyang pagsasalita at walang dead-air.

Nalaman ni Mama Emmeline na may Lupus siya noong 2007. May sakit na siya nang magkakilala sila ni Papa Mark pero hindi naging sagabal sa kanilang pagmamahalan ang karamdaman niya.

Ang Lupus ay isang autoimmune disease na inaatake ng immune system ang mga healthy cell at tissues ng katawan.

“My personal experience is a testament to how early detection could have been prevented major organ damage of kidneys and blood vessels,” ang sabi ni Mama Emmeline sa lunch date niya kahapon sa entertainment press.

Sakit ni Selena Gomez at FM gustong ipakilala ni Mrs. Villar

Walang kilala si Mama Emmeline na mga artista na may sakit na Lupus dahil kung meron, puwedeng-puwede sila na maging ambassador ng Hope For Lupus, ang foundation na itinatag niya.

Lupus ang sakit ni late President Ferdinand Marcos at may Lupus din ang Hollywood star na si Selena Gomez.

Sinabi ni Mama Emmeline na marami sa mga kababayan natin ang may Lupus pero hindi sila aware dahil ipinagwawalang-bahala nila ang mga nararamdaman at ang mga sintomas.

“The lack of awareness on Lupus has already cost so many lives. With Hope for Lupus, no more lives would be lost due to a lack of information and awareness about the disease,” ang sabi ni Mama Emmeline.

Celeb power needed to widen lupus awareness

Celeb power needed to widen lupus awareness By Karen Valeza (Manila Bulletin)

Published on December 11, 2016

Read original article

Afflicted with lupus herself, Democratic Independent Workers Association (DIWA) Representative Emmeline Aglipay-Villar knows the struggles one goes through in dealing with it, especially sans proper knowledge.

Emmeline Aglipay-Villar (mb.com.ph)

Emmeline Aglipay-Villar

Thus, Villar founded Hope for Lupus Foundation.

“To raise awareness about lupus for early identification of the disease and proper treatment for those who have it; to provide support for people with lupus and their families; and to help connect rheumatologists to family practitioners and barangay health centers,” Villar said of their aim at a recent press conference.

It was in 2007 when Villar was diagnosed with lupus, a disease wherein the immune system attacks body cells, tissues and organs. Prior, she has been experiencing some of its symptoms, such as blister-like lesions, rheumatoid arthritis, and swollen body parts, among others.

Seeing her going through different kinds of pain was hard for her family, particularly her husband Mark.

“They thought na parang mamatay na ako. Iyak sila ng iyak. Sabi ko sa kanila, there are lots of people who die from lupus but that’s not going to be me,” she said.

Villar believes awareness is key in all of these. Had she known earlier that her symptoms were caused by lupus, she could have gotten treatment then. She hopes to tap some celebrities to help her promote awareness about lupus.

“I hope someone would really step up and help me in this advocacy. Because I really want to raise awareness about lupus and I hope we can get funds and do a massive campaign about it, like on TV and social media.”

Hope for Lupus Foundation staged a few days ago the musical play “Mabining Mandirigma” by Nicanor Tiongson in partnership with University of the Philippines-PGH’s Rheumatology Department. It is a steam-punk dance musical depicting the life of Apolinario Mabini. All proceeds will go to indigent patients with lupus at the Philippine General Hospital.

Emmeline Aglipay-Villar: Inspiring life and love

Emmeline Aglipay-Villar: Inspiring life and love By Ronald Constantino (Philstar)

Published on December 3, 2016

Read original article

INSPIRING – Emmeline Aglipay-Villar is an inspiring person. While battling lupus, she remains highly accomplished as wife to Public Works Secretary Mark Villar, mother to one-year-old Emma Therese, lawyer, and congresswoman (representing the Party-List DIWA, Democratic Independent Worker’s Association).

And she maintains her pretty looks and positive attitude, as if having lupus (an autoimmune disease that causes swelling and a wide variety of symptoms) is a “normal” affliction like cold or fever.

Others who went through Emmeline’s medical crisis would have given up. But look at her, truly inspiring. To think that lupus is incurable, but then manageable.

LOVE STORY – Emmeline credits supportive family and friends for seeing her through the ups and downs of lupus.

The love story of Congresswoman Emmeline and Secretary Mark is one for the books, teledrama material like “Maalaala Mo Kaya” or “Magpakailanman.” Equally inspiring.

He accepted and loved her unconditionally – undergoing chemo, baldness, rashes and lesions all over her body. And even the possibility she could not bear him a child.

Against all odds, they got married and were eventually blessed with a child.

HOPE – Lupus, if discovered early enough, could be treated more effectively. In Emmeline’s case, it took years before her lupus was detected and had to undergo so many medical procedures, most of them not needed.

With that in mind, the congresswoman established Hope for Lupus Foundation, Inc., along with Melanie Cuevas and Lila Shahani (also with lupus). Dr. Paulo Lorenzo and Dr. Ging Racaza, Sidney Salazar, Nadine Bernardino offered their services to the foundation.

Their vision is a world without lupus.

AWARENESS – Emmeline says, “The lack of awareness on lupus has already cost so many lives. With Hope for Lupus, no more lives would be lost due to lack of information and awareness about the disease.”

There’s a lot’s of misconceptions and myths about lupus. In the first place, lupus is not communicable, “Di nakakahawa.”

Emmeline enumerates the mission of Hope for Lupus:
1. Increase awareness about Lupus
2. Conduct information campaigns for early diagnosis and proper treatment of lupus
3. Provide support and care to people with lupus and their families
4. Empowering people with lupus and their families
5. Facilitate coordination between primary care providers and rheumatologist to ensure that people with lupus are diagnosed early and receive proper treatments
6. Collaborating with other initiatives that fund lupus research to improve treatments for lupus and possibly finding a cure for lupus.

`Lupus Warriors´sa CCP

`Lupus Warriors´sa CCP By Jojo Gabinete (Abante)

Published on November 2, 2016

Read original article

 

Puwedeng isadula sa Maalaala Mo Kaya o Magpakailanman ang life story ni Diwa Representative Emmeline Aglipay-Villar dahil sa mga pagsubok na pinagdaanan nang malaman niya na may lupus siya.

Si Emmeline ang asawa ni DPWH Secretary Mark Villar na humarap sa mga miyembro ng entertainment press at nagbahagi ng kanyang mga karanasan bilang lupus patient.

Itinatag ni Emmeline ang Hope For Lupus Foundation para magkaroon ng national awareness  tungkol sa nasabing sakit at para matulu­ngan ang mga Pilipino na walang sapat na kaalaman sa auto immune disease na inaatake ng immune system ang malulusog na cells at tissues ng katawan.

Sinimulan na ni E­mmeline ang community outreach programs at funding para sa Lupus research sa Pilipinas.

“I’m so proud of my wife,” ang sabi ni Secretary Villar tungkol sa advocacy ng asawa niya na first cousin ng pumanaw na aktor na si Rico Yan. Magkapatid ang ama ni Rico at ang nanay ni E­mmeline.

Hindi naging hadlang ang pagkakaroon ni E­mmeline ng l­upus para hindi siya paka­salan ni Secretary Villar.

“Napakabait ni Mark,” ang sabi ni Emmeline dahil nang hindi tumigil sa panliligaw ang anak nina former Senator Manny Villar at Senator Cynthia Villar, inalis niya ang suot na wig at hindi siya nag-make up para makita ni Mark ang kanyang tunay na itsura.

Walang epekto ang ginawa ni Emmeline dahil ipinagpatuloy ni Mark ang panunuyo sa kanya na humantong sa pagpapakasal nila noong 2014.

Bawal magbuntis at manganak si Emmeline dahil sa sakit niya pero biniyayaan ng Diyos ng malusog na anak na babae ang pagsasama nila ni Mark.

Ngayong  December 4, 3:00 pm,  isang exhibit na may pamagat na Lupus Warriors at musical play na Mabining Mandirigma ni Nicanor Tiongson ang magaganap sa Cultural Center of the Philippines bilang bahagi ng official launch ng Hope For Lupus Foundation ni Emmeline.

Beneficiary ng exhibit at ng steam-punk dance musical tungkol sa buhay ni Apolinario Mabini ang Bridging Lupus Fund para sa indigent lupus patients ng Philippine General Hospital.

Umaasa si Emmeline na makakatulong ang Hope For Lupus Foundation sa kanyang pangarap na Lupus-Free Philippines.