104526885 – konskie, poland – june 01, 2018: facebook logo displayed on smartphone hidden in jeans pocket
DARAGA, Albay – In February 2013, while having a long-overdue dinner with her dear friend from med school, pediatrician Feleneta Villegas instinctively placed her fingers on her right wrist.
Feeling for her pulse, she noticed that it was beating rather faintly.
Her friend, who was now a cardiologist interventionist, casually suggested that she should get a Doppler scan to assess the blood flow in her arms.
Barely a month later, Villegas received the news no doctor ever wants to hear: she has Takayasu arteritis (TAK), a rare autoimmune disease that causes inflammation of the blood vessels, damaging the body’s largest arteries.
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Dubbed the “pulseless disease,” the condition affects only one in a million people each year and has a predilection for women below 40 years old.
“When I received my diagnosis, I cried really hard just thinking about the uncertainty of the future. It was so hard on me because I’m a doctor. I studied and learned about this disease in med school. That’s what makes it different—being a doctor makes you think of the worst-case scenario,” the 44-year-old mother of three from Tarlac City said in a phone interview.
“The first thing that came to my mind was early death. What would become of my children? At the time, I was six weeks pregnant with my youngest.”
“There was also this lingering question, ‘Why me, Lord?” she added.
Grappling with a disease that has no known cure, Villegas was determined to manage her condition by adhering to her treatment plan and educating herself about her diagnosis.
But given the rarity of the disease, there was also a deep longing inside of her to connect with people who could truly understand her illness journey.
Fortunately, a mutual friend introduced her to Mary Libeney Sito, a fellow pediatrician from Pampanga, who created the TAK Friends Facebook group chat in 2015 as a virtual support system for Filipinos diagnosed with this rare disease. An online lifeline so to speak.
A chronic warrior who endured right-sided paralysis and partial blindness in her left eye after experiencing a second stroke in 2015, Sito had a clear agenda.
“When I created the group chat, my goal was to provide a space where fellow TAK warriors in the Philippines could share their experiences and offer motivation to one another,” Sito said.
“It was designed to be a platform where members can discuss medical treatments, recommend doctors, and offer strategies for coping with the daily challenges of living with TAK,” she added.
Rare disease
According to Dr. Geraldine Zamora-Abrahan, head of the Vasculitis Special Interest Group of the Philippine Rheumatology Association, there is a need to increase awareness campaigns and government support regarding TAK, as it can save lives.
Anecdotal stories suggest that many patients hardly realize their arteries are narrowing until the disease has gradually progressed, as early stages often present with no noticeable symptoms.
As such, it is only when serious complications such as stroke, aneurysm, heart attack, kidney disease, blindness, and gastrointestinal bleeding, among others, have arisen that they are made aware of the condition.
Take the case of Karla Sofya Hipona from Davao, who at 14 simply dismissed her fatigue, headaches, and leg pain as mere growing pains.
Diagnosed three years later in 2007, she had to undergo a costly aortic repair surgery a year after due to severe blockage in her aortic arch.
But it is not only the lack of public awareness that is negatively impacting patient outcomes.
“One of the major difficulties for patients with Takayasu arteritis is the delayed diagnosis and the failure to receive proper treatment early on.”
“Specialized tests and treatments for this condition are also not widely available in rural areas,” Zamora-Abrahan said.
According to Madonna Rosella Braga-Aguila, 38, from Lucena City, despite consulting with multiple cardiologists in Quezon province for her severe palpitations and noticeable difference in blood pressure readings between her arms since 2017, not a single doctor considered the possibility of TAK as she was only treated for hypertension.
It was not until 2021, when her heart was pounding at a staggeringly high rate of 290 beats per minute, that she was referred to the Philippine Heart Center in Metro Manila.
It took four long years before she finally received the correct diagnosis of Takayasu arteritis.
Rheumatologist Harold Michael Gomez explained that the condition is difficult to diagnose because its early symptoms, such as fever, fatigue, limb weakness, high blood pressure, and blurry vision, are common in many other illnesses.
As such, doctors may suspect more common conditions first before considering TAK.
On top of that, blood and imaging tests required for diagnosis are often costly, which also deter patients from seeking medical help.
Delayed diagnosis and misdiagnosis, however, can pose higher risks and complications for patients as they are denied early intervention.
“It is crucial to put a spotlight on invisible illnesses because just because they are not physically noticeable does not mean that affected individuals are not suffering,” Zamora-Abrahan said.
Virtual support system
From being an online sanctuary for just four individuals in its nascent years, the TAK Friends Facebook group chat has now grown into an online lifeline for 38 members across the Philippines, a decade after its inception.
“This group has kept me sane during my toughest days. Seeing others go through the same struggles yet lead normal lives has given me the courage to believe that I can, too—that the pain and fear will eventually pass,” Villegas said.
For Susan Lumibao, 45, from Pangasinan, whose left toe had to be amputated in 2008 due to poor blood circulation in her legs, the platform has become an information hub, allowing her to share her experiences, exchange valuable information, and learn practical ways to manage her condition.
This virtual community has also functioned as a safe space for Braga-Aguila to openly express her thoughts knowing that she is in the company of people who truly “get” what she feels.
Given the unpredictability of the condition, Hipona said the online support group has helped her come to terms with her condition.
“Being part of the group has made me feel that I am not alone in this battle,” the 34-year-old mother said.
Testimonials such as these have further fueled Sito to harness the power of social media.
“The creation of this group underscores the importance of peer support for those with rare diseases like Takayasu arteritis, especially since reliable information and assistance can sometimes be difficult to access,” the 45-year-old founder said.
“Through this online lifeline community, patients and their families can feel more connected and supported, which is crucial in managing this rare condition,” she added. (PNA)
