It was October 2007 when Diwa Partylist Representative Cong. Emmeline Aglipay-Villar was diagnosed with lupus. “I remember seeing my parents tear-up as the doctor explained what lupus was. Mama asked with a trembling voice, “Doc, will Emmeline die?” I laughed aloud then and said, “Of course, not!”, even though I was unsure.”
Hope for Lupus Foundation’s primary goal is to educate the public by spreading awareness of the disease, in the hope of garnering further support among and for Lupus patients in the country. Lupus is a chronic condition and if untreated, can affect and cause damage to internal organs like your heart, kidneys, liver, and lungs. (Photos courtesy of HFL)
Despite affecting 5M people worldwide, many of us know little to nothing about Lupus and its five types, aside from the name.
Lupus is a disease that turns your immune system against you, hence the word autoimmune. However, lupus is not contagious, and its exact cause is still unknown.
This makes early diagnosis important, as in Aglipay-Villar’s case, since she began experiencing symptoms long before she was diagnosed.
Despite the lack of a cure, lupus is far from being incurable, and people with lupus can overcome their disease and control it, just like Emmeline, or Em, to friends and family, did 10 years ago. “I don’t want others to suffer the same fate as I did. I don’t want another person dying of lupus. I had to do something about it. This is one of my motivations for setting-up Hope for Lupus Foundation.”
“I started getting rashes that looked like blisters or cystic acne on my face and all over my body. I got anemia, and my hair started to fall off; I was almost bald. I had joint pains until I could no longer walk or do anything with my hands. I started to have back pains—which turned out were because of my kidneys. My legs, feet, and hands started to get bigger and bigger because my kidneys were not working well; I was retaining water. When I was diagnosed, major damage to my kidneys had already set in. If I had known of the symptoms of lupus, then I could have gone to the correct doctor and gotten immediate treatment. If there was higher awareness of lupus, then I could have been diagnosed earlier and controlled the lupus at its onset and averted major organ damage. It was a good thing that I was diagnosed before it was too late. Many others are not so fortunate: they die because they were diagnosed too late, or they were undiagnosed.”
Upon being diagnosed with SLE (or systemic lupus erythematosus, the most common of the five types), Aglipay-Villar began searching for an organization that could provide support in coping with the disease. After coming up empty-handed, she thought of setting it up herself, so that “not another person with lupus would die or suffer from the disease just because of a lack of awareness, and so that every person with lupus would have an organization to turn to for support”.
She approached Melanie Cuevas and Lila Shahani, who also have lupus, and invited them to join her in fulfilling her said mission. Dr. Paulo Lorenzo and Dr. Ging Racaza, both rheumatologists, volunteered to join the foundation along with Sidney Salazar and Nadine Bernardino, who are fellow advocates for lupus awareness.
With their combined efforts, the Hope for Lupus Foundation (HFL) was incorporated in November 2016.
In coordination with the Rheumatology section of the UP-PGH, HFL staged a benefit play called “Mabining Mandirigma” at the CCP, where proceeds went to the Bridging Fund.for Lupus. (Photo courtesy of HFL)
Hope for Lupus Foundation got to work quick, launching their first fund-raising activity last December 4, 2016, for the indigent lupus patients at the Philippine General Hospital (PGH).
The Lupus Bridging Fund of the Rheumatology section of the UP-PGH seeks to provide for the immediate financial needs of lupus patients in their acute treatment phase, aiming to shoulder medical costs that could reach up to P25,000-30,000 (per patient).
Knowing that ninety percent of lupus patients are women in their prime (just like Aglipay-Villar), donating to the Fund will most likely lead to helping a young woman with lupus overcome it successfully so she can return home and resume her livelihood.
With the volunteers either being family members of lupus patients, or having lupus themselves, the HFL members each shared snippets of their personal experience with lupus. (Photo courtesy of HFL)
Last Jan 21st, 2017, HFL held their first General Assembly, a getting-to-know-you activity where the foundation was introduced its volunteers, and vice versa.
“Most of us shed tears. There was not enough time alloted, so we committed to set up smaller groups for sharing each person’s unique story, as well as tips for coping with lupus.” Aglipay-Villar with two members at the Hope for Lupus Foundation’s first General Assembly
Attendees were encouraged to share their experiences, whether first- or second-hand. “It lightens the burden and we feel better knowing that someone knows and understands what you are going through,” – Emmeline Aglipay-Villar
Anyone can help HFL raise awareness about lupus simply through social media or volunteering to help organize activities, like recreational events or skills training for improved livelihood for lupus patients (i.e. yoga and cooking for lupus patients).
Aglipay-Villar hopes the hating and shaming will stop with increased public understanding of the causes, risks, and treatment of lupus.
“Many lupus patients don’t look sick, but in fact they could be experiencing chronic fatigue, joint pains, or other clinical manifestations. We tire easily and need to rest often. Some lupus patients report discrimination or shaming (in social media or face-to-face) because of the skin rashes/discoloration, alopecia, and “moon face” (from the intake of steroids).”
Knowing that lupus can hit people from all walks of life, like pop singer Selena Gomez, can help promote awareness of the disease and help patients become more empowered to share their experiences with the public.
With the first week of February being National Lupus Advocacy Week, HFL will begin putting up exhibits with basic information about lupus in different malls and hospitals in Metro Manila, starting in SM MOA this month.
Every month, the exhibits will be transferred to different malls around the Metro, and later on to provincial malls.
HFL is also partnering up with the Philippine Rheumatology Association to conduct seminars for barangay health workers, family doctors, and doctors in barrios all over the country.
They will arrange to have a poster of the ‘lupus symptom checklist’ in all barangay healthcare centers. “When people from rural areas go to their health center or their family doctors, these health professionals should be able to spot if that person should see the nearest rheumatologist for testing and possible treatment.”, Aglipay-Villar says.
Aglipay-Villar speaks at the Dec 2016 launch of HFL. Her advice for her fellow lupus warriors: “Don’t worry. Lupus, if caught early, is a manageable disease. There are ups, downs, good days, and bad days but we just learn to go with the flow. It gets overwhelming to think that this is a lifelong battle since there’s no cure, but we mustn’t let that thought consume us.”
Her other plans for this year include: writing a self-help book on living with lupus to help people cope with the disease (to launch in May), and another fund-raising project inlcuding an art auction in coordination with Leon Gallery (in December).
“Families of patients with lupus should understand that stress triggers the flaring-up of the lupus, so they should help their love one avoid stressful activities. Of course, it helps to be empathetic and understanding. Many times, there are behavioral changes too. But despite these changes, we are still the same people and we can resume normal activity once the symptoms stabilize to a manageable level. Life does not stop at lupus.” – Em Aglipay-Villar