Battling lupus: Stories of faith and hope

It started with rashes that looked like blisters and cystic acne ... Then came the joint pains in my hands, ankles, and feet ... Then there was hair loss ... Fatigue and dizziness also came ...”

The grim and telling signs were all there, but Party-list Representative Emmeline Aglipay-Villar relates that she chose to dismiss them as nothing more serious than an allergy or the effect of overfatigue or too much stress at work. After all, she was only 25 then, full of life and full of dreams.

Consequently, Emmeline wasn’t quite prepared for what her doctor would tell her when she was wheeled into the emergency room at 2 a.m. Her doctor said she had lupus nephritis.

“I didn’t know what lupus was so I read up on it,” Emmeline goes on to relate. “At first, I was misdiagnosed, a lot of lupus patients are misdiagnosed.”

Finally, the mysterious enemy unmasked itself and she confronted it head on. Thus began her lifelong bruising battle with lupus. But that did not stop Emmeline — her spirit ever strong and unwavering despite her fragile, ailing body wracked by lupus — from making all her dreams come true.

A lifelong, bigger-than-most battle

“We’ve had to fight battles bigger than most, sometimes against our own bodies that have turned against us. We fight fear, self-doubt and uncertainty; and the thought that there is no cure — that this is a lifelong battle — sometimes makes me falter,” Emmeline writes in the book Living Better with Lupus which she co-authors with Dr. Angeline Magbitang-Santiago, Dr. Evelyn Osio-Salido, and Dr. Geraldine Zamora-Racaza.

We’re here at the fully-packed Ruby Jack’s Steakhouse at the Upper Ground of City of Dreams for the launch of Living Better with Lupus, a comprehensive guide for Filipinos with lupus (proceeds from the sale will go to the Hope for Lupus Foundation, Inc. which Emmeline founded to raise awareness about lupus for early detection and proper treatment).

Among the happy guests are her visibly proud and supportive husband, Department of Public Works and Highways Secretary Mark Villar, with their one-year-old daughter Emma Therese, and Emmeline’s in-laws Manny and Cynthia Villar, and her proud parents Marinette and Edgar Aglipay.

“I hadn’t met Mark yet when I was diagnosed with lupus,” Emmeline begins to share her love story. “I didn’t tell him right away that I had lupus because at the beginning, I didn’t think our relationship would be more than friendship. When I saw he was becoming serious, that’s when I told him. When I told him about it, he said, ‘Ano yon?’ He didn’t know what it was. So I advised him to read about it.”

“I try my best to be a supportive husband,” says Mark with a big smile. “I just have to be very vigilant, because anytime she can flare up. So we’re just very vigilant.”

Melanie Cuevas: “We have to find that balance.”

Naturally loving husband

Is Mark extra loving to his sick wife?

“It comes naturally, not because of lupus, talagang loving lang kami,” comes his quick reply. “I’m so proud that she wrote a book; through this book, people would now be aware of lupus.”

And how many books will he buy? “As many as I can afford!” he pledges.

For her part, Senator Cynthia Villar vows, “We’re very supportive and we’ll do everything to help.We wanted an information campaign so patients would know at the early stage because if detected early, the hope for it not getting worse is better.”

How can government help lupus patients?

“I think it should be included in our health program,” says Senator Villar. “Our PhilHealth gives 90 sessions of dialysis.”

We ask Emmeline: What stage of lupus is she in?

“It’s not like cancer where there are stages, but the lupus nephritis that I have, I was told it was stage 4,” Emmeline explains.  “I can’t remember what percentage of my kidneys was functioning, but they were not filtering my blood so well that my legs were very bloated, my body was bloated, everything was bloated.”

She adds, “Yes, it’s an expensive disease. Since lupus attacks different parts of the body, a lot of doctors are called in — a rheumatologist especially for lupus, hematologist, nephrologist, cardiologist. One of the reasons we set up this foundation (that now counts over 500 members) was precisely to help members financially, to give medical assistance and financial support. The tests are expensive and some of the medicines are expensive.”

Lupus and pregnancy

After a pregnant pause, Emmeline discloses, “One of the things I feel sad about is I want to have more kids.”

At 25, when Emmeline was diagnosed with lupus, her doctor told her not to get pregnant. Her kidneys were severely affected then, she had high blood pressure, a low platelet count and low hemoglobin, all very dangerous to the baby. Her doctor said that only when she had her lupus under control could she have a baby.

Statistics show that nine out of 10 persons with lupus are women and these women are usually of childbearing age.

“I didn’t have a hard time getting pregnant, it was maintaining the baby,” says Emmeline. “As soon as I got pregnant, my lupus attacked the baby.”

But as Emmeline has always believed, “more things are wrought by prayer than you can ever imagine.” Mark and Emmeline have a beautiful daughter, their boundless source of joy and inspiration.

She recounts one other beautiful miracle: “I was joining my family (the Aglipays) in Europe, Mark was in Manila working, he’s like a workaholic.  On the second day, I developed a fever, 40 plus. I had to be confined, I told my mom I couldn’t follow their schedule and would just catch up with them in Venice. I didn’t know what was happening to me. On the fourth day of my confinement, nothing was still happening. Mark flew in when he found out I was going to be confined. I prayed to St. Therese, I also prayed for my daughter Emma. The next day, my fever surprisingly subsided.”

Today, while she does not show any scars from her day-to-day battle with lupus, Emmeline takes care of herself, eats healthy (she has a waistline to diet for), and tries to avoid stress despite her work as DIWA (Democratic Independent Workers’ Association) Party-list representative (now on her third term, she’s authored and co-authored 146 bills, 55 of which were passed into law).

Women of courage

Throwing their support behind Emmeline at this afternoon affair are fellow lupus survivors, most of them members of the foundation. Who’d suspect that these nattily-dressed lovely women are battling this ugly scourge called lupus? Like Emmeline, these courageous women each have an inspiring story of faith and hope to tell.

There’s Melanie Cuevas, 37, who’s had to live with lupus since she was 17, eventually becoming partly blind.  “Lupus made me fat and I lost my hair so I was depressed as a teen.”

She points at the butterfly cardboard figures strewn on the table where we’re seated. “These butterflies resemble the rashes that appear when you have a flare-up,” she tells us.

The vivacious Melanie, who now works for the family’s Sulo Hotel, designs jewelry, and writes, admits,  “Even if I want to do more, I have to take a break and take care of myself. Normal, whole people push themselves to the limit, they smoke, they drink. In our case, we have to find that balance. I can work today but not so much tomorrow.”

Then there’s Erika Valvueda, 31, who was diagnosed with lupus two years ago. “I had joint pains, my eyes were swollen, my body was bloated. My kidneys were severely damaged. I was so devastated because I wasn’t able to graduate with my classmates.”

Lupus may have broken Erika’s body but not her spirit. She’s bent on pursuing her dream of becoming a space scientist.

“Definitely, there’s a lot of hope for lupus, and we think we can control lupus; it’s just a matter of time and we’ll be able control it,” declares Dr. Evelyn  Osio-Salido. “We just need to be strong, to keep on looking for new discoveries, help our patients keep their sanity, guide them through the rough spots, and make sure they understand their disease.”

We ask Doc Evelyn: Is a lupus-free Philippines possible?

 “Anything is possible,” the good doctor asserts. “We didn’t think we would be able to control cancer, but now, we have cancer patients who walk around disease-free. If we could control cancer, why not lupus?”

She informs us,  “I see lupus patients every day, two or three. I empathize with them, most of them (90 percent) are very young, in their 20s and 30s; some of them are just beginning with their lives, they’re just beginning with their family lives. We want to help them have as normal a life as possible.”

So, what does Emmeline still hope to do for Hope for Lupus Foundation?

“I would really like to increase our efforts on awareness,” she discloses. “We’d like to participate in finding ways to find a cure for lupus. We will partner with organizations abroad.”

For these courageous lupus survivors, as they journey through the long dark night, every brand-new day brings new hope.

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For more information on Hope for Lupus Foundation, call 721-9855, email info@hopeforlupus.org.ph; visit hopeforlupus.org.ph; Facebook/Twitter/Instagram: @HopeForLupusPH.