Stepping out against a silent disease | Lifestyle.INQ

OCTOBER 27, 2022

Dr. Ging Zamora, Nikki Ng and Emmeline Aglipay-Villar
Dr. Ging Zamora, Nikki Ng and Emmeline Aglipay-Villar

It is often called the “silent disease,” even the “silent killer.”Systemic lupus erythematosus, or simply lupus, is not as talked about as other systemic disorders, but it is more widespread than many of us assume. The chronic autoimmune disease, wherein the body’s immune system mistakenly attacks healthy cells, tissues and organs, has a high disease burden, and usually affects women. Lupus is also a lifelong illness, as a cure for it has yet to be developed.

Hope for Lupus (HFL) Foundation, in partnership with Banana Peel, launched “Step Up for Lupus,” a collection of flip-flops which features designs and colors that represent the strength and fortitude of those who are stricken with the illness. Its first merchandise collaboration intends to raise awareness about lupus as well as come to the aid of patients who are in need of financial support.

Model and lupus warrior Trisha Duncan

“We want more people to know about lupus, and every purchase from Banana Peel’s ‘Step Up for Lupus’ collection helps a patient or two,” said Dr. Ging Zamora, cofounder of HFL. A portion of the sales of each pair of flip-flops from this collection goes to the foundation.According to Zamora, it’s an opportune moment that Lupus Awareness Month, which is observed every May, should also coincide with the month of Mother’s Day, because 90 percent of lupus patients are female and usually of reproductive age. The illness, however, can also affect men, the elderly and children.

“A lot of lupus patients who are members of the foundation are not able to afford the medications and treatment. We have to take our medicines every day for as long as we live—until there is a cure found for lupus—and that costs a lot of money,” explained lawyer Emmeline Aglipay-Villar, founder and president of HFL.

Hope for Lupus advocate Sid Salazar

Hospitalization costs

“Of course, it’s not just the maintenance meds, but also the tests that we need to take, such as blood tests. And if we get sick, which usually happens because the immune system is compromised, it’s another cause for us to think about finances, how to pay the hospitalization costs,” she continued.

Aglipay-Villar has been living with lupus for 16 years now, having been diagnosed with it when she was just 25.

“I experienced joint pains first. Then I would also have bouts of dizziness, and then fever. I started losing my hair,” recounted Aglipay-Villar. She would always feel fatigued and out of breath, even after walking just a few steps. She began to gain weight and her hands, legs and feet began to swell.

It was when she could no longer function properly—she couldn’t use her hands to eat or open doors—that Aglipay-Villar decided to see a doctor. And when she did, she didn’t know which doctor to go to.

“It was a difficult time because I wasn’t sure what would happen to me, or what my real disease was, because at that time they had to do several tests and it took a while before the diagnosis was made,” said Aglipay-Villar. It took seven years for her to be diagnosed correctly.

Teaming up with a fun brand of flip-flops such as Banana Peel will give HFL a wider reach. “It’s not just for people who could help, but also for those who are experiencing symptoms of lupus and might want to seek a doctor’s opinion, as well as for people in the medical field to consider lupus in their diagnosis of symptoms,” Zamora explained to Lifestyle.

Banana Peel marketing director Nikki Ng was suspected of having lupus a few years ago. “I was asked to take the AMA test and was eventually diagnosed with rheumatoid arthritis, an autoimmune disease that has similar symptoms to lupus,” said Ng. “My experiences allowed me to understand how painful and debilitating the disease can be.”

Mortality rate

The flip-flops come in four designs and colors, which represent the lupus community

The mortality rate for lupus patients could be high, so it’s really important that the disease is caught early, according to Zamora. Some patients only exhibit fatigue and rashes on various parts of the body or joint pains, but others present with seizures, heart attacks or kidney damage.

“Selena Gomez is one example of somebody with severe lupus,” said Zamora. The Hollywood pop star had to undergo a kidney transplant in 2017.

It’s crucial as well for one’s lupus to be managed correctly, and for people with the disease to not lose hope that they can go back to living a normal life. “They only need maintenance medications and continued follow-up with their doctors,” Zamora added.

Hope for Lupus Foundation was established in 2016 to help patients cope with the disease. Among its previous fundraisers and awareness raising campaigns were “Run for Hope,” a fun run sponsored by Ever Bilena; “Art Auction for Hope” with Gavel&Block by Salcedo Auctions; and photo exhibits.

It provides social support to lupus patients as well through monthly meet-ups. “So they’d get to know other people with the same condition, to feel that they’re not alone,” said Zamora. It is important especially for newly diagnosed patients to meet those who were able to triumph over the first few years of lupus, to see that it’s possible to lead a normal life even with the disease.

“The foundation aids indigent lupus patients, and to be able to sustain this effort, we have to do fundraising projects,” said Aglipay-Villar. “We’re happy that Banana Peel stepped up for lupus so that we can continue.” INQ

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