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Lawyer’s crusade: To raise funds for Panay residents with rare disease

(Continued from yesterday)

Six months after recovering from a rare neurodegenerative disorder that affects muscular movement, lawyer JP Anthony Cuñada resolved to help alleviate or end the misery of fellow dystonia patients, particularly in his home province of Panay.

Biking lawyer JP Anthony Cuñada rests at the arc welcoming tourists to Lucban, Quezon.
“Commonly, dystonia’s onset is when a person is at his prime age. That’s how terrible it is. If you’re the breadwinner in the family, you’ll become totally useless,” Cuñada said.

“I am asking money from people for those who are not operated. Very bad, very painful. You wish that you’ll die. You’d want to die, but you won’t,” he said of how persons with dystonia are suffering.

Last January, Cuñada biked from Pasig to Pilar, Capiz to solicit money for botox to be used by dystonia patients to alleviate their pain and suffering for three months. The cost of botox per shot is P5,500.

Based on the information he received, Cuñada said that of the 800 dystonia patients, already 300 have died. Of the 500 still suffering, only 50 of them underwent operations.

In Capiz, where the disease appears to be endemic, eight dystonia cases are discovered every month.

According to the National Center for Biotechnology Information of the U.S. National Library of Medicine, X-linked recessive dystonia-parkinsonism (XDP)—commonly referred to here as “lubag”—is a rare movement disorder that is highly prevalent in Panay Island.

It is characterized by severe, progressive torsion dystonia, which dominates the first 10 to 15 years of the illness and is associated or replaced by Parkinsonian features in the later years of life.

The report added that 95 percent of the affected individuals are males with 44 as the average age.

“Our scientists have already identified the gene responsible for X-linked dystonia-parkinsonism. After hundreds of years of suffering, XDP patients can look forward to a cure at hand. But our scientists need more data to fast track and to ascertain their findings,” Cuñada said.

“And I am going to help them gather data by encouraging patients and their family members to join our important research initiatives by donating blood and by signing consents for brain donation upon death,” he added.

According to Cuñada, the XDP community owes so much to Atty. Geraldine Acuña-Sunshine, who together with her brother Dr. Patrick Acuña founded The Sunshine Care Foundation based in Roxas City.

“This foundation is at the forefront of the initiative to find the cure for the genetic disease that has caused suffering to XDP patients for hundreds of years already,” the lawyer said.

“The Foundation also brings disorder specialists in Capiz to give the XDP patients, who are mostly destitute, the regular medical needs that they so badly need, among others. My brother, AZ, who also suffered from XDP, was one of the beneficiaries of this foundation before his death more than two years ago,” he added on his blog, as he thanked the Foundation for giving dystonia patients dignity, livelihood, and hope.

“Recently, the study initiated by the TSCF discovered the gene responsible for our involuntary movement. So, the cure is at hand. But our scientists need more data to double check their findings and to fast-track their studies,” Cuñada added. 

(To be continued)

Topics: JP Anthony Cuñada , National Center for Biotechnology Information , U.S. National Library of Medicine
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