Panay Dystonia: Is It God’s Curse?

Posted: December 31, 2010 in Uncategorized

Excerpts from Autobiography, The Chrysanthemum Paper by Theodore Alvarez Tan

CAPIZ.  Tales of the supernatural are as legendary as the province itself.  Situated in the Island of Panay in the Western Visayas region some 500 kilometers south of Manila, this Ilonggo-speaking country is made known nationally as hotbed for Aswangs, the most famous nocturnal creatures of the dark side.  Just mention of the word Capiz can send chilling images of tales about coven and witchcraft which are favored pastime stories of Filipino families at their after-dinner gatherings.  How this  legend began certainly did not originate without some historical insights.  

Historians which chronicled the 17th century Spanish colonizers noted Aswangs as the most feared of all nocturnal creatures.  The Spaniards’ irrational fear of the unknown emerged from an actual incident in Capiz in 1859. Two pursuing platoons of Spanish soldiers were dispatched to the hinterlands to track down a band of rogue women who abducted a Spanish friar.  The soldiers who survived the encounter gave a gory account of flesh-eating women who drained blood and carved out their men’s livers and hearts.  The friar had his entire viscera removed and his head put on a stake.  The incident cited originated from an old Kinaray-a transcription of a politically motivated band of the spiritualist women known as Babaylan, seeking vengeance for the abuses committed by the Spanish friars.  The event nevertheless sowed fear and terror, so revolting, to the public psyche, that it eventually gave birth to the Capiz Aswang myth.  Added to this, so the legend goes, Capizenos were also known then to adorn their homes with garlic bulbs, holy water and religious objects.   

Numerous depictions of how this supernatural creature looks like have been embellished over time by media, in text books, radio and serialized comics and its fixed manifestations and activities are a little difficult since they have been characterized differently from region to region.  Nonetheless common appearances that distinguish them from other mythological creatures do emerge. Aswangs are ordinary, simple folks that co-inhabit with ordinary townspeople.  They are quiet, shy and evasive.  By nightfall, they transform themselves into dogs, cats, birds, pigs, and take on human form of a grotesque hag with unkempt hair and extended fingernails or a deformed witch (mananangals) capable of cutting off its torso and leaving the lower part aground while the upper part grows a pair of bat-like wings and flies into the night looking for its prey.  Like chameleons they hide themselves behind bamboo posts and prey on their victims while they sleep. They are lightning fast and elusive and can enter thinnest slots in between windows and doors without being spotted. Some are believed to have long proboscises which to suck infants out of their mother’ wombs, their most prized prey.

Casting salt at aswangs is said to cause their skin to burn. This belief may stem from the purifying powers attributed to salt crystals by traditional witchcraft.  Another way of dealing with Aswangs is to keep a red pouch full of ginger and old coins.  The ginger keeps them away while the coins prevent them from lifting a person up.  One sure way of testing if the person next to you is Aswang or not, invite him to share a mirror with you.  If you find yourself alone in the mirror, run! 

Long before the advent of modern medicines and science, Aswang serves to explain miscarriages and other maladies among the old folks in rural and city areas.  Filipino mothers tell their children Aswang stories to keep them home at night.  As paranormal stories excite the public’s fantasy, comics radio programs and movies begin selling tales of Aswangs especially depicting missing children, grave robberies, strange noises, people with eccentric behavior or peculiar habits.

Debunking the Capiz myth

In 1975, Drs. Lillian Villaruz-Lee, the first Filipina Child Neurologist and erstwhile hospital directress of the Philippine Children’s Hospital in Quezon City and George Viterbo, a distinguished heart surgeon from Roxas City, Capiz generated global attention when they discovered the existence of a severe and progressive movement disorder called XDP, a form of Parkinsons with dystonic features. Likewise in 1978, an independent study by the Roxas Memorial Provincial Hospital, points to a physical aberration that is believed to explain the aswang myth and the reason why the province of Capiz is singled out in the folklores.  The disease in focus is Dystonia – a neurological movement disorder characterized by uncontrollable tremors or shaking of the limbs, tongue tremor, excessive salivation and difficulty in speaking due to the muscle contraction in all parts of the body.[8] Since this form of dystonia has certain manifestation that mimics Parkinson’s disease, it was eventually known as Parkinson’s Dystonia.

When a person has a fit, he salivates and spins like a top, extends his tongue,  much like being possessed by demons.   The victims usually hide their predicament from their neighbors out of shame and embarrassment.  They avoid going out of their houses during daytime because they misconstrue their condition as a curse from God.  They only come out at night when people are usually inside their homes. With poor visibility at night coupled with the general fear of the unknown, their neighbors oftentimes confuse them as malevolent creatures from the dark side. Thus the Capiz aswang myth is born. [9]

Research Team of Dr. Lilian Villaruz-Lee focuses on XDP [10]

In the study of the disease by the research team of Dr. Lee, the XDP (or DYT3 as it is now officially classified in the genetic catalog of dystonias) is discovered to be endemic in the provinces of Iloilo, Aklan, Antique and Capiz which comprise the island of Panay. The prevalence of XDP in Panay is 5.24 per 100,000; 0.34/100,000 in the general population. The pervasiveness varies in the different provinces; it being highest in Capiz at 18.88/100,000, 7.46/100,000 in Aklan, 1.28 in Iloilo and 0.83 in Antique. [11] Please note that Capiz and Aklan are one and the same province before legislation restores the latter to its original status in April 26, 1956 as the oldest province in the Philippines.  Out of the 376 cases which are recorded since 1975 to 2001 from 188 families, a high of 92% have positive family history.  Out of these samplings: 99% of the cases are males; the mean age of onset is 39.48 years; and the average duration of illness is 12.95 years; 94% initially manifest the disease with dystonic symptoms, while only 6% with Parkinsonian traits. [12]

These general demographics are based on reported cases from hospital wards, health centers or through word-of-mouth survey.  It is also reported that hundreds of the afflicted come from indigent families, mostly farmers, fishermen and coconut growers who can ill-afford proper medical care, therefore, their cases go unreported.  And if they report their cases, chances are their attending doctor may not be familiar with the  fundamentals of XDP and usually their cases are mistaken as typical cerebral palsy or other nerve disorders such as Parkinsons disease or multiple sclerosis. However these figures do not account for respondents that have already moved residences or have migrated to other countries such as the case of Dr. Jesus Villanueva, a reputable physician based in Philadelphia.  A general surgery residents at De La Salle University Medical and Philippine General Hospital and a fellow of the Philippine College of Surgeon, he completed his internal medicine residency at Fritzgerald Mercy Catholic Medical Center in Philadelphia and was board certified in internal medicine in the U.S.  He practiced medicine for eight years in the US before XDP claimed him at the age of 37. [13]

Dubbed as the Panay Dystonia, or lubag in the native tongue (as in lubagon, meaning musically out of sync), the XDP cases are expected to quadruple to hundreds of thousands in the next 20 years as inter-marriages with the carriers or the afflicted go unabated for lack of information on how to control this genetic disorder.  Dr. Lee has devoted her life setting up research on XDP.  She fears that unless the  government finds a way to systematize an information campaign that will eventually lead to effective pre- screening of inter-marriages among the affected, the social, psychological and economic consequence from this genetic disorder can be devastating to Filipino children in generations to come.

Dr. Lee continues to travel around the globe seeking grants to find answers to this enigmatic aberration that has already wrought havoc in the lives of thousands of Filipinos.  Because of the lack of recognition on the very existence of XDP, people which have history of the disease are simply not put through the grind in reporting such cases. It is lamentable that no funding from the government has been made available to the study of Dr. Lee to enable her and her team keep track on the effects of the mutation among the general Filipino population.

This author has found out lately that Genetic testing is already made available to Filipinos through the services offered at University of the Philippines – National Institutes of Health (UP-NIH). (Please refer to my 4th postings – Genetic Counseling: A Profession on the Verge of Being Discovered).  If the reports are true, the clinical data that can be derived from these testings will be an extremely enviable source  in the diagnosis and management of patients with XDP and other genetic disorders.  Also a private organization initiated by Dr. Virgilio Evidente of Mayo Clinic and Dr. Jesus Villanueva have set up a foundation which aims to establish cheap and affordable ways of genetic testing in the Philippines. This is currently being worked on in collaboration with the research division of St. Luke’s Medical Center in Quezon City.  Vil-Del, a Philippine company, has agreed to fund the initial start-up costs of the foundation. The U.S. based Dystonia Foundation has also indicated that it will partner with the foundation by providing administrative and research support initiatives. [14]

Dystonia and my family

My grandfather Calixto Alvarez died in 1963 with Parkinsonian dystonia although the case of the Patriarch was more exhibited as Parkinsonian than Dystonia.  Now, it has become apparent to the entire clan that our family line has been compromised after three deaths in the family are linked directly to XDP.  Males with XDP in the likes of Calixto pass this disease-causing mutation to all their daughters but surprisingly none to their sons.

From the genetic study done specifically on the family line of Calixto, it was reported that all my aunts, including mother “have a 50% chance of transmitting the mutation via each pregnancy: their sons who inherit the mutations are probably affected; and their daughters who inherit the same mutations are never affected.” [15] “If any of their affected sons bear male offspring, none of the offspring will be affected.  However,  if the same sons bear female offspring, chances are that female offspring will be a carrier.” [16]  I call this the black cycle because the mutation is perpetrated and the chain of the mutation is once again perpetuated.

My aunt Fidela, the eldest in the family of 5 boys and 4 girls, was the first to report of  XDP mutation within the clan.  Her only son, Serge Mendoza, Jr. suffered the worst case of XDP.  His affliction included intermittent twisting movements, muscular contortions and massive torso convulsions.  He endured 11 agonizing years of disability before death finally claimed him in March 2002.  A brilliant chemical engineer who was instrumental in the successful formulation of the industrial-grade PVC pipes used to replace all PLDT underground telephone lines in the greater Manila area, Serge Jr. became one of the country’s top 10 most outstanding salesmen of 1971 because of the PLDT project.  He passed away penniless after spending his entire fortune trying to stave off his dreadful malady.

My mother Fidelina has four sons and 2 daughters.  His eldest, Jules, passed away in April 2009 after being bed-ridden with XDP for almost 10 years.  Like our grandfather Calixto, his plight was a milder case of dystonia and more of Parkinsonian.  But unlike his cousin Serge who bore two daughters who in turn are potentially dystonia carriers, Jules, on the other hand, was more fortunate he begat six sons with no daughter.  Since there he did not bear any carrier the XDP was stopped dead at its track.

I am Fidelina’s next son and the fourth in the clan to fall victim to this terrible affliction.  I hardly noticed I had traits of XDP until a friend told me I was losing steam in my movement and gait.  One day, as my wife and I were reviewing the tapes of our mountain ascent in Nepal, I was taken aback to see the lack of vigor in my gait much like walking underwater.  I was 49 then.  It would take another 7 years after that first awareness before the disease eventually manifested as involuntary tremors on my right hand.  It was followed by my extreme difficulty in finding my normal gait in crowded places like malls, theaters and churches.  Unconsciously, I started to shuffle my steps and needed a moment or two to establish my bearings before I could continue to walk.  What terrified me some months later was when numbness started to develop from the toes of my feet to the heels and around the ankles, gradually becoming more prominent as months progressed.  It began to irritate me especially when I retired at night.  The numbness could last for hours.  The trick I used to stop numbness was a mere touch to any part of my feet or put them under a blanket and pushed all digits against it until a complete wall was formed.

By the year 2006, I was officially diagnosed to have Parkinson’s by a neurologist who probably did not know or heard of XDP or simply did not put two and two together.  If he knew that XDP was prevalent in Panay Island, my case history in his clinic would have given my symptoms away. Although the term XDP or Panay Dystonia was unknown to us then, it did not occur to the family that the same strain my grandfather had was from the same mutation that affected Serge, Jr., then my brother Jules and eventually, I.

In the next months or so, I lived a life of a Parkie until I had to go home to Capiz in 2007 to bury my father.  It was during the wake that Jules’ son, Joey, informed me about the works of Dr. Lee.  It was after a long conversation with him that I realized the frightening connection of my afflictions to the reality of XDP.  Dr. Lee, I was told, had been seeing my brother since she regularly flew to Capiz to monitor her “wards.”  I immediately sought her upon reaching Manila.  My first meeting with Dr. Lee answered more questions than I could muster.

My two grandsons, Lucas and Josh Tan-Garcia, in their home enjoying their favorite weekend pastime.

The most chilling realization that emerged in my study of XDP was the probability that my two grandsons, robust as they were, could also be affected by it.  My only child, Lora, who had married in October 2003, sired two healthy boys, Josh and Lucas.

One quiet Sunday morning, I thought I was reliving a déjà vu when my 5-year old Josh asked me, “Lolo, why do you walk funny?”  I could only smile for it was exactly the same question I had asked my grandfather Calixto when I was his age and too young to understand his affliction.

The Alvarez Clan.  From left to right -back row: Rosario Alvarez (married to Juanito Vega, childless), Ricardo Lauz, Leonardo Alvarez, (Tony, 2nd child of Rosario) Chin Po Yu-Tan, Jules Tan, Leopoldo Alvarez, (Edwin, the 1st child of Maria), Serge Mendoza, Jr (2nd child of Fidela Alvarez-Mendoza), Sergio Mendoza, Sr., Oscar Alvarez, Willliam Alvarez, Gilda Alvarez (married to Jess Salgado – not in picture) middle row: Maria Eribal (married to Leopoldo Alvarez), (Romeo, the 2nd child of Maria), Lydia Alvarez (married to Ricardo Lauz, childless), Rosario del Rosario (married to Leonardo Alvarez), Ramon (3rd child of Rosario) Fidelina Alvarez (married to Chin Po Yu-Tan), Lola Sanang Asas-Alvarez, Lolo Calixto Alvarez, Fidela Alvarez (married to Sergio Mendoza, Sr.), Noemi Almosa (married to Oscar Alvarez, Emma (married to William Alvarez), Marian (1st child of Emma) Front row from left to right: Nellie (2nd child of Fidelina), Eugene (3rd child of Fidelina), Theodore (author and the 4th child of Fidelina), Myrna (1st child of Fidela).  (The X stands for confirmed XDP patients while the C stands for probable and identified carriers in the family) Taken at the Tan’s Residence in Roxas City, Capiz in December 27, 1955.

To be continued– (see Panay Dystonia Part-2)

Sources and credits:

  1. Scott, William Henry (1994). Barangay: Sixteenth Century Philippine Culture and Society. Quezon City: Ateneo de Manila University Press. ISBN 971-550-135-4
  2. Tan, Michael (2008-10-26). “Aswang, Aswang!”. Sunday Inquirer Magazine
  3. Ibid
  4. Cruz, Neal (2008-10-31). “As I See It: Philippine Mythological Creatures.” Philippine Daily Inquirer
  5. Eugenio, Damiana (2002). Philippine Folk Literature: The Legends. Quezon City: University of the Philippines Press. pp. 490. ISBN 971-542-357-4.
  6. Ibid
  7. Curran, Bob; Ian Daniels (2005). Vampires: A field guide on the creatures that stalk the night. Career Press. pp. 37. ISBN 9711561480070. Retrieved 2009-05-08.
  8. Dystona – Of Health & Horror. Anthony R.  Retrieved 2010-12-12
  9. Ibid
  10. E.L. Munoz, Department of Pathology, Children’s Medical Center, Quezon Blvd., Quezon City. K.T. Tan, MRI Center, Cardinal Santos Medical Center, Greenhills, San Juan Metro Manila.  M. T. Reyes, College of Biochemistry, University of the Philippines, Taft Ave. Metro Manila.
  11. Dystonia Philippine Registry 2000 courtesy of the Journal of Clinical Pathology
  12. Ibid
  13. Chrysee Emilliano (Business World) on Drs. Jesus Villanueva and Virgilio Evidente.
  14. Ibid
  15. X-Linked Dystonia Parkinsonism by Virgilio Gerald Evidente, Associate Professor of Nuerology, Mayo Clinic College of Medicine, Scottsdale, AZ.
  16. Ibid

Additional reading:

  • Maxima (1971). Creatures of Philippine Lower Mythology. Quezon City: University of the Philippines Press. ISBN 9710606813.
  • Ocampo, Ambeth (2010-02-16). “Looking Back: ‘Aswang’ and counter-insurgency”. Philippine Daily Inquirer
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Comments
  1. Joe Morata says:

    Is this God’s Curse? Do you think God singled out your clan/ family just because they lived in Panay? Or is it the other way around?
    The whole earth was cursed way back in Adam’s days. Check out Genesis 3: 17-19. All of Adam’s children inherited diseases, thorns, thistles and death. We all have to work and it does not end until we return to dust. This was all Adam and Eve’s doing. Don’t blame God.
    We all have to go through life with whatever DNA has passed down to us. I myself not only have heart conditions inherited from my mother. I also have the possibility of Parkinson’s from my father. If you study the Bible you will note that God did not spare any of His favorite children these trials and tribulations. Abraham, Moses, Daniel, the 3 Hebrew boys, Job, Paul, Peter , you name it. Not a single faithful servant was spared. The mighty God Himself came down on earth as one of us just to die in a most horrific death on the cross. Does that even make sense?

    Our whole existence here is about trial. This is all a test. The question you have ask yourself is. Will you still trust Him? Will you still love God with all your heart, with all your soul, with all your might? Will you still love and not resent those that do not seem to be cursed like you? Will you still love your neighbor as yourself? Even If they are cruel and mean to you? Know that they too were made in God’s image.

    Selah. Think about it.

    BTW, the Panay inhabitants. Did they practices witchcraft (mankukulam)? Did they worship and harbor these demons call Tikbalang and aswang and tik-tik? It is easy to dismiss all these in this time and age and say that they are all folklore. Could some of these cases been caused by demon possession, or demon affliction. I we claim to believe in Jesus and the Bible we have to believe in this side too? A whole slew of the miracles that Jesus did involved casting out demons like epilepsy

  2. W. says:

    Ted, you mentioned the word ‘black cycle.’ The Scripture however has one word for this cycle: generational. Forwarding you on what i gleaned as Scriptural:

    “For the word of God is alive and active. Sharper than any double-edged sword, it penetrates even to dividing soul and spirit, joints and marrow; it judges the thoughts and attitudes of the heart.”
    Hebrews 4:11-13

    Interesting there. The Word of God not only addresses the world of the soul and spirit, but alludes to a detailed knowledge of the joints and marrow. Marrow? That is a set of your recombinant DNA.

    Soul , spirit, heart. ‘Thoughts’ and attitudes of the heart. Thoughts, thinking, and the privilege working ‘knowledge’ humanity derives from this revelation. Ask the Word to guide you. Remember John 1:1, the Word is God Himself Incarnate in the Son…even from the very beginning. Now that’s your real Epistemology 101, your study of knowledge. Knowledge and faithful solution to many of our questions r/t this generational issue.

    ON WHAT ARE CALLED “GENERATIONAL CURSES”

    Psalm 116:10 (NKJ) I believed, therefore I spoke, “I am greatly afflicted.”

    The term “generational curses” comes from the “law of generations”, which God revealed to Moses (text below) and is interestingly present in nearly every religious system in the world, although no one has ever discovered a scientific dynamic of explanation. That the “law of generations” is true, everyone seems to recognize. How it works is another matter.

    The idiom of “generation” in the New Testament we believe has nothing to do with the popular notion from the 60s–as in “generation gap”–but rather in the Biblical/Hebraic meaning of “who generated you” or where you come from; generation as in progeny. Keep in mind how keen people were in the first century on progeny–or generation. “We are OF our father Abraham…” said the Jewish religious leaders, and Jesus said, “You are OF your father, the devil.” Get it?

    “This generation will not pass…” Jesus said to His Jewish audience–meaning the Jews will still be around till the very end of the age… This was a radical promise that, considering what happened in 70 AD and afterward, has nonetheless come true. “Heaven and earth will pass away, but my words will never pass away.” What do you think? Was Jesus talking about this “generation” as in the 1960s “gap” sense? Or was He talking about “generation” in the sense of race, a meaning offered in the footnotes of many study Bibles? Was Jesus wrong in this prophecy, or are we the ones in error of what “generation” denotes?

    In any case, a “familiar spirit” is an interesting pun in English. According to Scripture the effects of sin tend to run in families, and indeed are a curse.

    Exodus 34:6-7 (NIV) And he passed in front of Moses, proclaiming, “The Lord, the Lord, the compassionate and gracious God, slow to anger, abounding in love and faithfulness, maintaining love to thousands, and forgiving wickedness, rebellion and sin. Yet he does not leave the guilty unpunished; he punishes the children and their children for the sin of the fathers to the third and fourth generation.”

    But what does this Old Covenant “generational curse” stuff mean in the practice of a life of faith NOW? What many believers do not know is that through the work of Christ on the cross, we have another option available. This freedom in Messiah was even prophesied in the Old Covenant. What is true must still be believed and actualized by us in practice, so we need to “hear” the word of the Lord and then enter into the “rest” that God has promised.

    Long ago, the Jews had taken the above revelation to Moses and turned it into a poetic taunt–impugning God’s justice as we will see in the following verses. The prophets report this and make an interesting promise in rebuke–fulfilled in Messiah and to be believed and seized by us!

    Ezekiel 18:1-4 (NIV) The word of the Lord came to me: “What do you people mean by quoting this proverb about the land of Israel: ‘The fathers eat sour grapes, and the children’s teeth are set on edge’? As surely as I live, declares the Sovereign Lord, you will no longer quote this proverb in Israel. For every living soul belongs to me, the father as well as the son–both alike belong to me. The soul who sins is the one who will die.”

    Ezekiel 18:14-16,18-20 (NIV) “But suppose this son has a son who sees all the sins his father commits, and though he sees them, he does not do such things: He does not eat at the mountain shrines or look to the idols of the house of Israel… He does not oppress anyone… He does not commit robbery, but gives his food to the hungry and provides clothing for the naked… He will not die for his father’s sin; he will surely live. But his father will die for his own sin, because he practiced extortion, robbed his brother and did what was wrong among his people. Yet you ask, ‘Why does the son not share the guilt of his father?’ Since the son has done what is just and right and has been careful to keep all my decrees, he will surely live. The soul who sins is the one who will die. The son will not share the guilt of the father, nor will the father share the guilt of the son. The righteousness of the righteous man will be credited to him, and the wickedness of the wicked will be charged against him.”

    Jeremiah 31:29-32 (NIV) In those days people will no longer say, ‘The fathers have eaten sour grapes, and the children’s teeth are set on edge.’ Instead, everyone will die for his own sin; whoever eats sour grapes–his own teeth will be set on edge. “The time is coming,” declares the Lord, “when I will make a new covenant with the house of Israel and with the house of Judah. It will not be like the covenant I made with their forefathers…”

    John 8:11 (NIV) … Jesus declared. “Go now and leave your life of sin.”

  3. W. says:

    Ted, some serious added footnotes.

    Question: “What does the Bible say about breaking generational curses?”

    Answer: The Bible mentions “generational curses” in several places (Exodus 20:5; 34:7; Numbers 14:18; Deuteronomy 5:9). It sounds unfair for God to punish children for the sins of their fathers. However, this is looking at it from an earthly perspective. God knows that the effects of sin are passed down from one generation to the next. When a father has a sinful lifestyle, his children are likely to have the same sinful lifestyle as well. That is why it is not unjust for God to punish sin to the third or fourth generation – because they are committing the same sins their ancestors did. But they are being punished for their own sins, not the sins of their ancestors. The Bible specifically tells us that God does not hold children accountable for the sins of their parents (Deuteronomy 24:16).

    There is a trend in the church today to try and blame every sin and problem on some sort of generational curse. This is not biblical. The cure for generational curses is salvation through Jesus Christ. When we become Christians, we are new creations (2 Corinthians 5:17). How can a child of God still be under God’s curse (Romans 8:1)? The cure, then, for a “generational curse” is faith in Christ and a life consecrated to Him (Romans 12:1-2).

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