Filipino poet hits the road to highlight rare disease

Males from the island of Panay in the Philippines suffer from the body movement genetic disorder
Filipino poet hits the road to highlight rare disease

Policemen escort poet J.P. Anthony Cunada on his arrival in Iligan City in the southern Philippines on July 9. (Photo by Divina Suson)

Despite suffering from debilitating X-linked dystonia-parkinsonism (XDP), Filipino poet and lawyer J.P. Anthony Cunada decided to ride his bicycle to the south of the sprawling archipelago.

His aim is to increase awareness of the disease that is geographically centered on his triangle-shaped home island of Panay, population 4.5 million, in the nation's central region.

Cunada hopes to spur efforts to find a cure for the chromosomal disorder, including through sufferers donating samples of their blood and brain tissue for research.

"I want to be the last person to have dystonia in this generation," he told ucanews.com.

Parkinsonism refers to a range of abnormalities including tremors, slow movements, rigidity and a shuffling gait. A pattern of muscle contractions known as dystonia can develop.

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Cunada, 37, left capital Manila on the northern main island of Luzon on June 30 for the two-week ride south.

While he was able to obtain funding for a specialized US$40,000 procedure to lessen the effects of the disorder, few poor people on Panay have this option.

For temporary relief, a patient can undergo deep brain stimulation involving the insertion of electrodes.

The disease often strikes in middle age and commonly takes about five years to fully develop.

Cunada expressed hope that a cure will be found in the next 10 years.

However, scientists need more data in order to fast-track research and this is where it becomes important for suffers to collaborate, including by providing blood and tissue for analysis.

Genetic mapping of families on Panay is seen as crucial for improving therapy techniques based on a better understanding of the origin and causes of the disease.

The private Sunshine Care Foundation in the Philippines is supporting the scientific extraction of genetic material from brain matter.

When Cunada first learned he had the disorder, he wanted to die after witnessing immense suffering within his extended family.

Women carry the disorder but seldom develop symptoms.

"My mother had four brothers, three of whom died due to dystonia," Cunada said.

In 2014, his own eldest brother, aged 44, also succumbed. "I saw his suffering," the lawyer said.

All cases investigated so far have been linked to Filipino ancestry, suggesting a single founder and genetic homogeneity.

The prevalence in the Philippines has been estimated at 1/322,000 but as high as 1/4,000 among males in Capiz province in the northeast of Panay.

Out of 800 dystonia patients, 300 have already died. And of the 500 still alive, only 50 have been able to undergo remedial procedures.

"It is an ugly, painful disease," Cunada said.

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