Hope for Lupus hopes to bring awareness to the importance of early detection and proper treatment of the chronic autoimmune disease.
By MARIA MILAGROS G. AUGUSTINES | JAN 18, 2018
In 2007, Emmeline Aglipay Villar received a devastating diagnosis. After noticing rashes and cystic acne on her face, she went to see her physician, who broke the news—she had lupus, an incurable autoimmune disease.
“I remember seeing my parents tear up as the doctor explained the condition. My mother asked the doctor with a trembling voice, ‘Doc, will Emmeline die?’ I laughed out loud then and said, ‘Of course not!’ even though I was unsure of the answer myself. Many Filipinos do not know anything about lupus. Most think that having lupus is a death sentence. It is not. Though at present there is no cure, people with lupus can overcome their disease and control it, like I did. But there are some instances when one is diagnosed too late and not much can be done to save the person’s life. This makes early diagnosis of the disease important.”
Emmeline Aglipay Villar and Dr. Geraldine Racaza, who are among the founders of the Hope for Lupus Foundation
Villar, a three-term congresswoman and lawyer by profession, together with Melanie Cuevas and Lila Shahani, rheumatologists Dr. Paulo Lorenzo and Dr.Geraldine Racaza, and lupus awareness advocates Sidney Salazar and Nadine Bernardino co-founded the Hope for Lupus Foundation in 2016. The foundation is a non-profit organization that fights lupus through increasing awareness about the disease for early diagnosis and proper treatment, and by providing support to people with lupus and their families. The group also provides financial as well as emotional support to afflicted patients.
On January 21, the foundation is staging the Hope for Lupus Run at SM Mall of Asia. The race aims to spread awareness about the chronic autoimmune disease that is often overlooked and misdiagnosed. There is a 1K march for those suffering from lupus as well as 5K, 10K, and 21K distances for the general public.
The first run will take place at 4 a.m. onward, and is presented by the Chamber of Cosmetics Industry of the Philippines, in partnership with Ever Bilena, SM Mall of Asia, and the Ayala Land Foundation.
Villar hopes that timely information on the disease may allow others to recognize the symptoms and be proactive about seeking treatment. The group also hopes to go further by coordinating with other initiatives so that they can fund lupus research, improve lupus treatments for lupus, and possibly even find a cure for lupus in the future.
With the campaign, Villar hopes to reach people from all walks of life. “It’s important to make this information available not just to people who have access to the internet or television, but also to those living in the rural barangays. Our foundation seeks to educate barangay health workers, doctors in the barrios, and primary care providers about lupus and its symptoms,” she says. “We want to be able to facilitate their coordination with rheumatologists nearest to them. We believe this can significantly reduce deaths due to lupus.”