Lawyer biking across archipelago to raise awareness on rare Panay disease

By ERWIN MASCARIÑAS
Correspondent .

A LAWYER with a rare disease that threatens people’s normal motor functions is traveling across the country on his mountain bike in an effort to raise public awareness about the X-linked dystonia parkinsonism (XDP).

Lawyer JP Anthony Cuñada stayed over for a night in this city on Sunday before proceeding with his over 2,000-kilometer bike journey across the archipelago.

Barely a year after undergoing a deep brain stimulation operation to fight off the symptoms of what XDP, the 37-year-old lawyer decided to challenge himself by riding alone on a mountain bike from Luzon, Samar Leyte in Visayas, and Mindanao. From Mindanao, he plans on proceeding to Panay in Visayas where XDP is endemic.

Cuñada left Pasig City at around 4:30 am in June 30 for what he called as “Climbing the Unclimbable: Defeating Dystonia.”

XDP, also known as “lubag,” is a hereditary neurodegenerative disorder endemic in Panay.

Cuñada said he hoped that his public awareness campaign would result in blood and brain tissue sample donations from dystonia patients and their relatives.

“With this, more research can be conducted and hopefully, better interventions and a cure can be found,” he said.

Cuñada added: “I want to be the last in my generation to have this disease. So, my focus really is to convince fellow dystonia patients and their family members to fill out a form that is on my blog page.”

He said the consent form means that the donor agrees to give his blood and brain tissues within eight hours after death to Sunshine Care Foundation Inc. in Roxas City in Panay for purposes scientific research.

“I am a mountaineer, and I lived a life pushing my boundaries, but when I was diagnosed, I couldn’t control my leg anymore. It had its own involuntary reactions and movements. So after my operation, when I had my motor movements again, I decided to push my limits,” he said.

“There is no question that a cure can be found. It is just a matter of time and more research,” he said.

Cuñada said his operation did not cure him.

“It never was, but it helped and allowed me to do what I want to do everyday without losing my motor functions, especially on my legs which was the first symptom,” he said.