Making the invisible visible
For many people living with lupus, it is a shared path of strength, compassion and resilience, carried not just by the patients themselves, but also by their families, friends and the medical professionals who stand beside them every step of the way.
In my case, it all started when I was around 11 years old. I remember my mom just returned from a trip abroad and noticed my eyes looked different, which prompted her to immediately bring me to the doctor. Upon examination, the doctor discovered an internal hemorrhage in my left eye. At that time, I was tested for leukemia, diabetes and other diseases you can name, but they couldn’t come up with any diagnosis.
The next year, when my fingertips and toes started swelling and turned bluish-purple in color, the doctor thought it was rheumatoid arthritis. It was only a few years later, at age 17, when I started having chest pain, falling hair and a butterfly-shaped rash on the cheeks, that I was recommended to consult a rheumatologist. After some tests abroad, it was confirmed that I had systemic lupus—an autoimmune disease in which the body literally attacks itself. The physical effects of the disease can be cruel, including joint pain, organ damage, dramatic hair loss, and debilitating fatigue—some of which I have experienced on and off, throughout my life. And while lupus can be managed, it has no cure.
After decades of silence, how speaking up about lupus became a source of purpose.
To say that lupus changed my life is an understatement; aside from the occasional, unexplainable pain that you get on your “bad” days, the changes in my physical appearance affected me the most, especially since I was diagnosed in my teens, an age when you can say that one’s self-esteem is at its lowest.
Weight gain and rounding of the face are just a few side effects of my medication (prednisone, a corticosteroid). My friends at that time can attest to how depressed I would get at my thinning hair, especially when I was put on cyclophosphamide therapy (a chemotherapy medicine) a few years later because of lupus nephritis (inflammation of the kidneys). I lost so much hair that I had to cut it really short. And even when my hair grew back, the texture was not quite the same as before.
At that time, I made the difficult decision of pausing my extra-curricular activities, which were pistol shooting and dancing, to be able to finish my college degrees. My treatment then took around three years and by the time I finished, I was strong enough to go to work, where I found a job in magazine publishing, and the rest, as they say, is history.
Through the years I’ve learned to deal with my condition, thanks to a combination of new medicines and several doctors who have been taking good care of me. But apart from family, friends and some people I worked with closely, I never spoke or complained about my condition, until one day in 2014, I decided to write about it for another newspaper in time for World Lupus Day, to help spread awareness about lupus.
After almost two decades of silence, speaking up led to an opportunity to make a difference. Through the recommendation of my former editor and a mutual friend, I was invited by fellow lupus warrior Emmeline Aglipay Villar to join her cause in 2016. Together with other board members, Dr. Ging Zamora, Dr. Paulo Lorenzo and Sid Salazar, Hope for Lupus was formed.
A shared journey
Lupus is a complex autoimmune disease often called “the great imitator”—its symptoms mimic many other illnesses, making it difficult to diagnose.
For Emmeline Aglipay Villar, or Em, as she is fondly called, the journey to diagnosis was years in the making. Back in 2007, Em was a fresh graduate from UP Law who had recently lost her bid in the midterm elections. It was the first time that her partylist, Diwa, lost. She remembered ignoring all her symptoms. She dismissed the stiffness she felt in her hands and ankles, the swelling of her feet and legs as a result of her exercise routines.
Despite advice from her colleagues to consult a physician for the severe pain she was experiencing in her lower back and joints, she opted to work. But one day, she could no longer move her hand. It was then that she decided to bring herself to the hospital. An emergency biopsy was performed and it revealed glomerulonephritis, an acute inflammation of the kidneys. Even then, she still insisted on signing a hospital waiver to allow her to leave and inform her law office of the medical condition.
It took several months before specialists were able to confirm that she was suffering from lupus. At that time, her blood count was down. Her kidney was already affected and her anemia got worse. She had rashes on her face and other parts of the body. 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 says, “but he was wrong.” Married to Sen. Mark Villar, they now have a 10-year-old daughter named Emma, whom Em says gives her the strength to live.
When the former lawmaker and Department of Justice Undersecretary was diagnosed, she did not know anyone with a similar condition. There was no support group available and information on the disease was scarce. It was this same personal battle with lupus that led her establish the Hope for Lupus Foundation—which aims to promote the early detection and proper treatment of lupus by increasing awareness about it.
On its 10th year
Since 2016, Hope for Lupus has made efforts to increase awareness through regular information drives and mall exhibits. A booklet called Lupus Kayang-Kaya Ko ‘To was also published in collaboration with the Department of Health that was distributed to barangay health centers to give helpful information on the diagnosis and management of lupus. Various fund-raising initiatives are continuously being held to host monthly support groups, livelihood programs and assistance for patients.
But beyond that, having a community where connections are formed and friendships are ignited can show how shared experiences can empower and uplift those who are on a similar journey. While we sometimes feel alone in our struggles, those who have walked a similar path often want to offer their support and friendship. By sharing our experiences, we can create bridges of connection. It’s these shared experiences that become a powerful tool for inspiring empathy, mobilizing communities, and effecting positive change.
Warning signs of lupus
Lupus can mimic the symptoms of the common flu. See a doctor immediately if you experience some of these symptoms: joint pain, swelling of the legs, butterfly-shaped rash on the cheeks, bluish fingers, fever, hair loss, and fatigue.
