“Never let lupus stop you from what you want to achieve.”
In this monthly feature, we shine a light on different individuals in society who are using their voice, experiences, influence, and platforms to spark a positive change. Through these stories of lives lived with meaning, we hope to inspire everyone to make a difference in whichever corner of the world they may be.
It’s almost 14 years now since Emmeline Aglipay-Villar was diagnosed with lupus.
She first experienced debilitating joint pains, edema, low blood counts, and blood and protein in her urine. She met many doctors and was misdiagnosed multiple times before it was confirmed that she has lupus in 2007.
Prevalent in women of child-bearing age but also possible for men, young or old, the disease causes a person’s own immune system to attack the body, causing the previously mentioned symptoms, as well as skin rashes and organ damage. Over five million people worldwide suffer from lupus.
“I did not like the pain,” Villar tells Lifestyle Asia. “It was terrible and it did not allow me to do the things that I used to do on my own. This was quite frustrating.”
She went through a lot of difficulty because of the disease, largely because it is unpredictable.
“One day we could be okay and the next, we could be in critical condition,” she explains. “Many patients need to be hospitalised because of complications and from my experience, my days confined in the hospital were the worst days in my life with lupus.”
Coping with the disease
At the time of writing, it hasn’t been particularly well for Villar. She has been in pain and feeling sick, unable to attend to work, among other things on her schedule, to focus on recovery.
There is currently no cure for lupus so when Villar received her diagnosis, she immediately thought of what she can do to get well. “I knew in my heart that I would get well,” she says.
The key is lifelong management.
“The medicines I take consistently help a lot,” she says. “I also see my doctors and have blood tests regularly.”
She also tries her best to be mindful of her overall wellbeing, too.
“I tried to follow the recommended diet and avoid stress, but I failed numerous times,” she jokingly says. “I try to live life normally, though, while being careful with what I eat. I cannot consume raw food.”
During the pandemic, Villar has also been extra careful.
“The treatment for lupus is to suppress the immune system so this makes us doubly vulnerable to COVID-19,” she says. “I just mainly stay at home and we strictly practice safety protocols.”
Through it all, her family and friends were there with her.
“They help me cope with the demands of having a chronic illness,” she says. “They get me through the tough times, especially when I’m confined at the hospital.”
When she needs to get her treatments or see the doctors, Villar says her friends accompany her. Her parents, as well as her husband, Mark, also stay with her at the hospital and bring her food.
As lupus can easily be mistaken as any other disease due to similar symptoms, many cases go undiagnosed.
This is why Villar is helping raise awareness about the chronic illness through her foundation, Hope for Lupus, for prevention and early diagnosis.
Through the non-profit organization, she has written a book called Living Better with Lupus, which details her experience as a lupus patient. A short Filipino version, Lupus Kayang-Kaya Ko ‘To, has been made available for free in all barangay centers nationwide, too. Mall exhibits and fora have been mounted, too, to engage the Filipino public.
Now, Hope for Lupus has partnered with Gavel & Block by Salcedo Auctions for a benefit auction.
Happening on October 16 via salcedoauctions.com, the auction will feature close to 100 lots, including works by leading contemporary Filipino visual artists such as Emmanuel Garibay, Raffy Napay, Jigger Cruz, Alfredo Esquillo, Jr., Manuel Ocampo, Daniel dela Cruz, Winner Jumalon, and Olan Ventura.
Also going under the hammer are sterling silver pieces from Cartier and Tiffany & Co. Fine Baccarat and Lalique crystal, as well as jewelry by Riqueza and Janina Dizon.
The proceeds of the auction will help support the foundation’s work in the illness’ early detection and proper treatment.
Villar understands how difficult life with lupus can be.
“In a way, however, everything I went through has made me stronger spiritually and mentally,” she says. “It has also made me more resilient and appreciative of life.”
By staying optimistic and helping in any way she can, she hopes to spread hope and encourage other lupus patients like her.
“Never let lupus stop you from what you want to achieve,” she says. “[It] does not define you. You [have a] say [in] what your life will be and though there are challenges, you can overcome them and live a full life.”
Banner Photo from @emaglipayvillar on IG