(First of a series)
Lawyer JP Anthony Cuñada, 37, is so desperate that he is taking his bicycle and riding across the country for the second time this year.
Why? To raise public awareness to one of the rarest diseases among humans, X-linked dystonia-parkinsonism, a rare neurodegenerative disorder that affects muscular movement that incidentally spread only in Panay Island, where he came from.
Cuñada said that he is riding his bike from Luzon to Mindanao because he wanted dystonia “to end in his generation.”
“I want to be the last person to have this dystonia in this generation. This is how desperate I am,” Cuñada told reporters in an interview in Tacloban City where he had a brief stop before heading to Dipolog City on Friday, July 6.
While most cases of dystonia are recorded from men coming from Panay Island, Cuñada said that “women are the carrier but the disorder manifests only in men.”
As to his family, Cuñada said his dystonia was traced from the first generation in his mother side whose three brothers died due to the ailment which remains largely a mystery with still no known treatment.
“While in our own family, my eldest brother died due to dystonia on July 31, 2014. He did not undergo an operation. He was only 44 years old. I saw his suffering. It was really painful,” Cuñada added on how he and his other four remaining siblings have seen the misery brought by dystonia to their eldest brother.
Cuñada’s mother, a retired midwife, is now 75 years old. His father’s death, however, was not related to dystonia.
Last July 14, 2017, Cuñada was lucky enough to undergo an operation via Deep Brain Stimulation for his brain to be able to produce “enough electricity” to control his normal movement.
Cuñada’s medical operation, however, did not come cheap. It would cost P2 million for a dystonia-stricken person to be able to at least regain his normal muscular movement, he said.
“Before I was operated, I said to myself I don’t want to go that operating room. But my cousin arrived from Canada and gave me a seed money of 35,000 Canadian dollars, which is equivalent to P1.3 million,” Cuñada recalled on how he was lucky enough to get a second lease on life through the help of family and friends who contributed money for his operation.