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Treating a condition with no cure

Click on image to view slideshowBy Leilanie Adriano, VERA Files

LAOAG CITY—Alainrey Gamit Barroga needs a botox injection soon, and not because he is vain.

The 38-year-old artist was diagnosed with X-linked Dystonia Parkinsonism (XDP) locally known as "lubag," an inherited neurodegenerative condition affecting mostly males that can only be treated but for which there is no known cure.

Lubag means twist in Ilonggo, the language on Panay island where the condition was first found to be endemic by a 1975 study.

"I can't control my head, I keep on nodding and I can't even drink or eat," said Barroga through an exchange of emails since he could hardly talk at the time of the interview.

Barroga's doctor, local neurologist Agnes Cariaga-Manalo, said XDP is a movement disorder that manifests through "abnormal posturing, excessive movements and Parkinsonism" as well as in "decreased movement."

One of the treatments Barroga is undergoing is botox injections, which help control his movements. But a botoxinjection, which costs about P27,000 per session,is expensive for a family man like him without a permanent job.

This is why Barroga needs to sell his paintings in time for his next botox injection in August. Barroga paints while at home, whenever he is not in pain.

Click to see more of Barroga's paintingsClick to see more of Barroga's paintings

Barroga,whose brother and other cousins also have dystonia, said he is just thankful that he is being supported by his family, particularly his sisters working in the US, Germany and Libya.

"I felt relieved that even though my disease has no cure, there is still an alternative remedy even just for a short period of time," he said.

Barroga, who has also worked as a videographer for the local government and as photographer for various publications, now considers himself a person with disability (PWD) although he has yet to apply for a PWD ID card.

In its preamble, the United Nations Convention on Rights of PWDs recognizes that "disability is an evolving concept and that disability results from the interaction between persons with impairments and attitudinal and environmental barriers that hinders their full and effective participation in society on an equal basis with others."

As early as last December, when Barroga started to feel the symptoms of XDP because he was having difficulty swallowing and was stuttering, he knew that he too had inherited the disease.

He recalled that his elder brother had XDP at the age of 30 and lived for over 15 years more, and then died in Barroga's arms while they rushed him to the hospital. Some of his male cousins based in Bicol and Manila also inherited the disease, and their family chart is now being studied by dystonia specialist, Lilian Lee, who first diagnosed Barroga with XPD.

Manalo said while her last three dystonia patients trace their ancestry in Panay, Barroga is her first patient from Laoag. "We still don't know why it started there in Panay," she said.

In his autobiography The Chrysanthemum Paper, Theodore Alvarez Tan, who has XDP, even associated dystonia with the aswang(mythical creature that preys on pregnant women) myth:  "When a person has a fit, he salivates and spins like a top, extends his tongue, much like being possessed by demons" and those who have it "avoid going out of their houses during daytime because they misconstrue their condition as a curse from God."

Manalo has been prescribing Barroga'smedication for the past few months to relieve his pain. "But the treatment for XDP is supportive," Manalo said, which medications are given to alleviate symptoms.

"Another treatment is botox injection, which is not meant only to prettify the face," Manalo said as the injected botox, usually on a higher dosage depending on the size of the affected area, will relax the lips, tongue, jaw or neck of a patient if his condition progresses.

Barroga tried botox treatment last May through a neurologist specializing in memory and movement disorder and toxin therapy based at the Metropolitan Medical Center in Manila.

Other options for treatment include brain surgery or deep brain stimulation which costsP1 million. In this procedure, toxin is injected into the affected muscle to block the release of the chemical that produces muscle contractions. The injection needs to be repeated about every three months, said Manalo.

Filipino doctor Virgilio Gerald Evidente, an associate professor of neurology at the Mayo Clinic College of Medicine and co-director of Deep Brain Stimulation Program in Scottsdale, Arizona, wrotein a book that "XDP is inherited in an X-linked manner. For example, the family history is approximately 94 percent of cases."

"Males with XDP pass the disease-causing mutation to all of their daughters and none of their sons. Women who are carriers have a 50 percent chance of transmitting the mutation in each pregnancy: males who inherit the mutation will be affected and females who inherit the mutation will be carriers and will usually not be affected,"the book said.

It added, "Carrier evaluation of at-risk female relatives is possible if the mutation has been identified in the family. Prenatal testing for pregnancies at increased risk is available by for families in which the diagnosis has been confirmed by molecular genetic testing."

This means that Barroga's only daughter is also a carrier with a 50 percent chance of transmitting the disease-causing mutation.

"I may be a strong person who can accept anything that happens to me. Even if I die today, I am ready but what I fear most is if I can't see my 9-year-old daughter Juliane grow old," he said.

Barroga added he sometimes thinks it would have been better if he had cancer instead. "At least, ako ay makapagsalita pa at alam ko kung kalian ako mamamatay. It's so painful na hindi ko ma-explain ang sakit and I can't speak anymore. I use straw to have something on my stomach (At least I would still be able to speak and I would know when I will die. I cannot explain the pain)," he said.

There are times when he still tries to join some friends when they have photo shoots, mountaineering and trekking or biking around the city.

Although he is in pain most of the time, he still cannot resist the urge to grab his DSLR camera to take photos of anything that fascinates him, from insects to family portraits.

At home, he makes himself busy fixing broken furniture or painting the house.

For her part, Alain's wife Geraldine went through a process to understand and accept her husband's disease.

"I try to educate myself about his illness. Actually, I was already aware of the disease when my brother-in-law had it. I always ask questions, I read and research online, and I don't just depend on what doctors tell us," she said, adding that she is also grateful for the emotional and financial support of her husband's family.

When asked if Juliane has undergone genetic testing as she could be a potential carrier, she said, 'Not yet. I'm afraid!"

Nonetheless, their family doctor assured herthat there is a 99 percent chance that Juliane will not inherit the disease because XDP affects mostly males.

Geraldine said she hopes with previous dystonia cases and improved technology, "we'll get through this."

(VERA Files is a partner of the "Fully Abled Nation" campaign that seeks to increase participation of PWDs in the 2013 elections and other democratic process. Fully Abled Nation is supported by The Asia Foundation and the Australian Agency for International Development. VERA Files is put out by senior journalists taking a deeper look at current issues. VERA is Latin for "true.")

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