It’s been exactly a year since the book “Living Better with Lupus” was launched by the Hope for Lupus Foundation. The comprehensive reference and self-help book authored by Diwa party-list Rep. Emmeline Aglipay-Villar, Dr. Evelyn Osio-Salido, Dr. Geraldine Zamora-Racaza, and Dr. Angeline Magbitang-Santiago is one of the foundation’s attempts to create awareness on this auto-immune condition that affects over a million people worldwide.
“It was targeted at those who already have lupus, and their family members and loved ones who wanted to understand the condition more thoroughly, and at their own pace,” said Zamora-Racaza, a clinical associate professor at the University of the Philippines College of Medicine, and consultant at St. Luke’s Medical Center Global City and Manila Doctors Hospital.
In their desire to reach more people and create even more awareness, the foundation recently came out with an abridged version in conversational Filipino that will be distributed for free by the Department of Health in health centers and government hospitals nationwide.
“Lupus, Kayang-kaya Ko ’To” is designed for easy reading and is only 33 pages long. It contains basic information on lupus, lists some of the observable symptoms, and answers a number of questions women frequently ask: What causes it? Is it hereditary? Will I still be able to get pregnant and give birth?
“We designed it to be more illustrative and colorful with fewer pages to entice even those who do not have symptoms to pick it up, leaf through it, and be aware of what lupus is,” Zamora-Racaza said. “This way, knowledge can spread exponentially. More people with lupus can possibly be made more aware that they have to consult with a rheumatologist.”
Personal reason
Aglipay-Villar had a more personal reason for making lupus awareness her advocacy.
“I was diagnosed with lupus in 2007 but had been experiencing the symptoms years before,” Aglipay-Villar said. She suffered from anemia, hair loss, joint pains, frequent fevers, and rashes that she each treated separately.
“I took pain relievers for the joint pains, applied topical steroids for the rashes, and ignored the hair loss and the fevers. The pain meds and steroids alleviated the discomfort from the conditions but they did not treat the illness, which is systemic,” she said.
“Because I was not diagnosed and had not received the proper treatment, my lupus got worse. It affected my kidneys and my blood condition worsened. If If I had known the symptoms of lupus and there was a better awareness about the disease then I could have averted the kidney damage and treated the lupus earlier.”
The lack of awareness—and pertinent literature—acted as a catalyst which led Aglipay-Villar to put up the Hope for Lupus Foundation. From 47 volunteers when they were just starting, the foundation now has over 500 volunteers with 98 percent of them living with lupus.
These volunteers serve as a support system for one another. “Lupus is a difficult disease to manage and having someone who understands what you are going through and is experiencing the same things that you are experiencing is a big help in coping with the disease,” Aglipay-Villar said.
“My fellow lupus patients constantly tell me how much the regular support group meet-ups help them as it has helped me. My family and friends are there but it is different when you get to talk to people who are going through the same experience,” she added.
Visit hopeforlupus.org.ph; follow @HopeForLupusPH on Facebook, Twitter and Instagram.