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.”