Melanie and Emmeline: ‘Hope For Lupus’ Crusaders

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.”