Folklore has always been our way of naming the things we feared, especially when meaning was beyond our reach. In the absence of answers, we created stories. We made creatures out of shadows. And sometimes, we made monsters out of people.
On Panay Island, the "aswang label became that monster. It clung to families, passed down as rumor and shame, long before science would ever explain their pain. For decades, men living with a rare illness were treated as something unnatural, not because they were, but because the world didn't know how else to understand them.
However, the real tragedy was never the disease itself-it was how society chose to see them.
X-linked dystonia parkinsonism (XDP), locally known as "lubag," is a rare genetic and movement disorder originating from Panay Island that primarily affects middle-aged men. This condition is often linked to the aswang myth, as patients were once described as "transforming due to their muscle-twisting and tremors over time.
In truth, at the core is a mutation in a gene on the inherited X chromosome, which disrupts how nerve cells in the brain's movement centers communicate and survive. As these cells weaken and die, the body first twists in dystonia before gradually slowing into parkinsonian stiffness.
Patients struggle to stand upright, speak, or swallow due to uncontrollable muscle contractions. Most develop symptoms around age 39 and live an average of 13 years after onset.
Before the tremors came, each patient once lived a life anchored in purpose. One was a Certified Public Accountant who found joy in teaching, another a seafarer who explored the world. Above all, they were brothers, sons, and fathers-men who built their lives around work, family, and community.
According to recent data from the Sunshine Care Foundation (SDF), an organization dedicated to XDP research and support, about two in every 10,000 Ilonggos live with the condition.
While modern research has identified its cause and origin, no cure has yet been discovered. Five decades after it was first reported in Roxas City, Capiz, more than 500 afflicted individuals were left untreated by medicine, and often by the world around them.
As symptoms began to appear, their lives took a turn, trying to comprehend such a condition. Subtle muscle spasms evolved into uncontrollable movements that stole their speech, balance, and independence.