Capiz launches XDP program to combat rare disease

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By Mariela Angella Oladive

Themed “NCD Management: Hope for XDP Patients and Families Towards the Healthiest Capisnons,” the province of Capiz has formally launched its X-linked Dystonia-Parkinsonism (XDP) program at the Circulo Convention Center in Pueblo de Panay, marking a significant step in rare disease response in Western Visayas.

X-linked Dystonia-Parkinsonism, or Lubag Syndrome, is a rare hereditary movement disorder that primarily affects adult males, with many cases traced to Panay Island.

The condition begins with involuntary muscle contractions and abnormal postures and progresses to symptoms of Parkinsonism, including tremors, rigidity, and slowness of movement.

Over time, XDP leads to severe disability, affecting speech, mobility, and basic daily functions.

Provincial Health Officer II Dr. Ramon Alex T. Nolasco, who presented the Capiz XDP Strategic Plan and Action Roadmap, emphasized the urgency of a long-term public health response.

In a social media post, he outlined the roadmap’s focus on awareness, early detection, support networks, research, and psychosocial and medical services for patients and families.

“Dystonia may bend the body but it will never break the spirit,” he said during the launch.

“The roadmap is not just a plan, but a testament to our compassion, unity, and resolve. Together, we will turn hope into healing.”

“We need to have a working plan as part of our operational plan to be included in our local investment plan for health,” he added.

Provincial Administrator Atty. Arthur John Biñas, representing Governor Fredenil H. Castro, expressed full support for the program from the provincial government.

Dr. Sophia Pulmones, assistant regional director of the Department of Health in Western Visayas, emphasized the need for multi-sectoral collaboration in tackling rare diseases like XDP.

The launch brought together local health officers, hospital chiefs, members of the Provincial Health Board, barangay health workers, and other community stakeholders.

Event highlights included a video testimonial from an XDP-affected family, a medical management update from Dr. Jose Ascension L. Arancillo, FPARM, and the unveiling of a Pledge of Commitment banner by the Capiz XDP Task Force and partner agencies.

In her closing remarks, Dr. Evelyn T. Bolido, Medical Specialist IV, reaffirmed the province’s commitment to uphold dignity, raise public awareness, and expand access to care for Capisnons living with XDP.

The Capiz Provincial Health Office emphasized that the program launch is not only the beginning of new services but also a declaration of sustained support to ensure that no patient is left behind.