Oral medication, therapy, and surgery remain the only available interventions to ease the pain for those who can afford them. For many who cannot, they become reliant on others for daily routines, often forced to leave their professions as their bodies no longer obey them.
Patients who returned home to seek comfort were instead met with fear. Some communities saw them through the lens of folklore, cruelly tied to the "aswang." Isolation, rather than care, became their only remedy amid the waning state of their illness.
This led to a gradual increase in depression among XDP patients, where many begin treatment only to abandon it later, worn down by the slow, irreversible decline of their condition. Worse, death has become imminent.
Breaking the curse
Culture shapes how we perceive illnesses, separating people from myths.
In one case, a family with a member diagnosed with XDP believed that they were victims of "sumpa," a curse that had been passed down through generations. Their theory stemmed from the condition's resistance to prescribed medicine and the presence of similar symptoms in the maternal great-grandfather.
Despite being incurable, patients and communities must recognize XDP as a medical disorder that calls for empathy, not superstition.
The SDF is dedicated to finding a cure for XDP while providing holistic care through medical and community programs.
Beyond research, the foundation offers livelihood support, psychological and family counseling, and financial assistance. It also leads awareness campaigns to dispel the myths and stigma surrounding the disorder.
The provincial health office of Capiz just launched an XDP program on September 5 this year, marking a historic step toward inclusive healthcare and rare disease management in Western Visayas.
This initiative unites government agencies, health experts, and communities to provide comprehensive care, awareness, and support for affected patients and their families.
Understanding is the first act of healing. To see illness not as a curse but as part of the shared human story is to return compassion to those long defined by fear. In the quiet struggle of every XDP patient lies a truth often overlooked: humanity endures even when the body falters.
Every tremor, every broken syllable, speaks of lives that once moved freely-of bodies who simply wish to be whole and free again. They do not need saving from spirits. They need saving from stigma.
Isolation can be cured by education and awareness. A "sumpa can be broken once science replaces folklore.
Healing begins when knowledge bridges the divide between myth and medicine. Perhaps, that is also where hope resides, in every community that chooses to listen, in every family that refuses to hide, and in every hand extended not out of fear but in faith in our shared humanity.
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