Mysterious illness afflicts mostly men with roots in Panay

A mysterious illness has been prevalent among men that affected more than 500 Filipino patients in Panay Island.

According to Amielle Ordonez’s Stand for Truth report, the XDP or X-linked Dystonia Parkinsonism, also called as “lubag syndrome” is a movement disorder that has been found only in people with roots in Panay.

It is a genetic disease in which patients infected have experienced involuntary movements, muscle stiffness, slow movements, tremors, and speech impairment.

Experts have discovered the disease in Panay Island, which covers the province of Aklan, Antique, Capiz, and Iloilo.

“XDP, it is known to cause progressive dystonia with or without parkinsonism among Filipino males with maternal roots from the Panay Island in the Philippines,” Dr. Johanna Melissa Destriza, adult neurologist in Evangelista Medical Specialty Hospital, said.

“It is a progressive condition, progressive dystonia, progressive meaning habang tumatagal lumalala siya,” she added.

Over 500 Filipino patients have been recorded to have XDP in Panay Island since 1970.

To date there is no cure for this disease, however, there are several treatments recommended for those patients to live a normal life.

In the report, Jeffrey Guevarra, 38-years-old, acquired the disease, which he believed that he inherited from his father who hailed from Iloilo and also died from the illness.

Guevarra found a new home with the help of his friend Rosenie Lopez who took care of him after his family had rejected him due to his condition.

“Dalawang kamag-anak ang pinuntahan ni kuya, parehas na nireject si kuya. Yung feeling na nireject siya syempre napakahirap lalo na sa ganoong situwasyon,” Lopez said.

(He went to his other relatives, and they rejected kuya. The feeling of being rejected is of course very difficult especially in his situation.)

Jeffrey said that he remained hopeful in life with the help of his friends who took care of him, “Oo, sobra! Nakapag-asa (Yes, I am very hopeful).”

“Nahingi ako ng tulong financial support at gamot sa sakit ko,” Jeffrey said.

(I’m appealing for financial support to buy medicine for my illness.)

Based on the data from support group Sunshine Care Foundation, two out of every 10,000 Filipinos from Western Visayas have this condition.

Apart from men, there are also some women who have been diagnosed with this condition. However, compared to men, their symptoms are milder.

“To be honest, up until this moment hindi rin namin masagot kung bakit talaga sa Panay Island lang and hindi pa namin napagtatagpi-tagpi lahat kumbaga kulang pa yung mga datos natin para masabi na eto talaga yung reason,” Dr. Jed Ong, movement disorder neurologist of Makati Medical Center and Jose Reyes Memorial Medical Center, said.

(We still have no answers on why the disease was only among residents in Panay Island. We still don't have enough data to answer the root and cause of the disease.) —Richa Noriega/NB, GMA News