As the global community observes Rare Disease Day on February 28, attention is drawn to the experiences of Filipinos living with rare conditions, particularly Takayasu arteritis (TAK), an autoimmune disease that affects the arteries. This year’s spotlight is on pediatrician Mary Libeney Sito, a staunch advocate for raising awareness about TAK, which affects one in a million individuals annually, predominantly women under 40.
Diagnosed with TAK in 2015, Sito’s journey underscores the challenges that come with rare diseases—especially the lack of awareness and access to timely treatment. “We need more awareness and better access to treatment for rare diseases. I can personally attest to how crucial early diagnosis is in managing these conditions,” Sito shared.
A Personal Battle
In February 2013, pediatrician Feleneta Villegas noticed an unusual faint pulse in her wrist during a dinner with a friend who was a cardiologist. This seemingly small observation led to a diagnosis of Takayasu arteritis, a disease that causes inflammation in the blood vessels, often leading to severe complications like stroke, heart attack, and kidney disease.
Villegas, who was pregnant at the time, found herself overwhelmed with fear and uncertainty. “As a doctor, I know what this disease can lead to, and it was terrifying. The first thought I had was, ‘What will happen to my children?’” she recalled. “The worst-case scenario seemed inevitable.”
Despite the lack of a cure, Villegas was determined to manage her condition and sought information from others with similar experiences. That’s when a mutual friend introduced her to Sito, who had also been diagnosed with Takayasu arteritis and created the TAK Friends Facebook group in 2015 to offer support to fellow patients.
A Virtual Support Network
Sito’s creation of the TAK Friends group marked a turning point for many living with the condition in the Philippines. The online space allows members to share their personal experiences, discuss treatment options, and support each other through the challenges of living with a rare disease.
Sito, who has experienced paralysis and partial blindness after a stroke in 2015, explained, “The goal was simple: create a platform where individuals with TAK could connect and offer support. It’s about more than just medical advice—it’s about sharing hope and motivation.”
Raising Awareness and Overcoming Barriers
According to Dr. Geraldine Zamora-Abrahan, head of the Vasculitis Special Interest Group of the Philippine Rheumatology Association, increasing awareness about Takayasu arteritis is critical for saving lives. “Many patients are unaware of the narrowing of their arteries until the disease has progressed. It’s only when serious complications arise that they realize the severity of their condition,” she said.
Zamora-Abrahan also highlighted the challenges in diagnosing TAK, as its early symptoms, such as fatigue, high blood pressure, and blurry vision, are common in many other illnesses. Misdiagnosis and delayed treatment are common, especially in rural areas where specialized tests and treatments are scarce.
A prime example of this is Madonna Rosella Braga-Aguila, 38, from Lucena City, who spent four years seeking proper treatment. Despite seeing multiple cardiologists, she was initially treated for hypertension. It wasn’t until 2021, when her heart rate surged to an alarming 290 beats per minute, that she was correctly diagnosed with Takayasu arteritis.
“Specialized tests for TAK are expensive, and many people can’t afford them,” said Dr. Harold Michael Gomez, a rheumatologist. “Misdiagnosis and delayed intervention can lead to severe complications, which is why early detection is so important.”
The Power of Peer Support
What started as a small group of four individuals has now grown into a vital community of 38 members across the Philippines. The TAK Friends Facebook group has become more than just a source of information; it has become a sanctuary for those coping with the unpredictable nature of the disease.
For Villegas, the group has been an emotional lifeline. “The group has kept me sane. Seeing others who go through the same struggles and still lead normal lives has given me the courage to believe that I, too, can overcome this,” she said.
Susan Lumibao, 45, from Pangasinan, who had to undergo a toe amputation due to poor circulation from TAK, sees the platform as an essential information hub. “It’s a place where we share experiences, exchange advice, and learn how to manage our condition,” she said.
For Braga-Aguila, the group has provided a safe space to express her feelings without fear of being misunderstood. “The community here understands what I’m going through. They don’t just sympathize—they empathize,” she shared.
The support from the group has also helped Karla Sofya Hipona, 34, from Davao, who underwent surgery for aortic repair after being diagnosed with TAK. “The group has made me feel like I’m not alone in this battle,” she said.
Sito, who continues to advocate for awareness and peer support, emphasized the importance of harnessing social media to provide such a crucial platform. “For those with rare diseases, especially TAK, finding reliable information and support can be difficult. Our group has become a lifeline for many, and it shows just how powerful social media can be in bringing people together,” she said.
As the conversation around rare diseases continues to grow, initiatives like TAK Friends highlight the importance of community and information-sharing in managing conditions that often go unnoticed by the broader public.
Related Topics
