HD Spotlight in Asia
Professor Roongroj Bhidayasiri, M.D. – Founder and Director of Movement Disorders Center in Thailand
Dr. Bhidayasiri’s major interest is in movement disorders and he also leads many national and international clinical research trials in Parkinson’s disease. Significantly, he leads a Parkinson’s disease registry in Thailand in collaboration with the Thai Red Cross society, the Ministry of Public Health, Bangkok Metropolitan and the National Health Security Office of Thailand. Moreover, he works as the chair of the scientific committee of the Parkinson’s disease guidelines in Thailand, the director for Chulalongkorn Comprehensive Movement Disorders Center and an associate professor for Chulalongkorn University Hospital in Bangkok. He is also the president of Thai Parkinson’s Disease Society and a visiting associate professor of neurology for David Geffen School of Medicine at UCLA.
In addition to his specific works on Parkinson’s disease, he is also the founder and director of the Chulanlongkorn Comprehensive Movement Disorders Center and has treated over 10 families with Huntington’s disease in Thailand. He recounted a story about a patient with Huntington’s disease, who wrote a letter to the Queen of Thailand for help because her family members thought she was possessed by a demon and made her go through traumatizing exorcism. For more information on Mental illness and Exorcism Across Different Cultures, please refer to our article.
Moreover, most physicians in Thailand don’t recognize the symptoms of Huntington’s disease and misunderstand them as Parkinson’s disease. His goal is to raise more awareness about Huntington’s disease and other rare motor disorders in Thailand through outreach events and educational online sources, using HOPES as a model.
Medical Degree and Training:
Dr. Bhidayasiri graduated in medicine at Chulalongkorn University in 1994. He received the membership of the Royal College of Physicians of London and Ireland in 1998 and was certified by the American Board of Psychiatry and Neurology in 2005. Awarded the fellowship of the Royal College of Physicians of London in 2008 and the Royal College of Physicians of Ireland in 2010.
Primary Research Interest/project:
His research interest lies in movement disorders, particularly the clinical aspects and advanced therapeutics of Parkinson’s disease. He has published over 70 articles in peer-reviewed journals and has served in the editor-in-chief of the Thai Journal of Neurology and also a reviewer of more than 10 international journals on neurological disorders. He also serves as a writing committee panel member of the American Academy of Neurology on the practice parameters of movement disorders.
To make appointment and direct inquiry to Dr. Bhidayasiri, please refer to his contact form on Thai Parkinson’s disease Clinic website.
HD Spotlight in Asia
Dr. Bhimsen Singhal – Founder of the Parkinson’s and Movement Disorder Society in India
Dr. BhimSen Singhal is the Director of Neurology at Bombay Hospital Institute of Medical Sciences in Mumbai, India. Although there are existing organizations for neurological illnesses like Cerebral Palsy, Alzheimer’s disease, and Stroke, Dr. Singhal is concerned that there were none actively advocating for the cause of Parkinson’s or other motor disorders. During the fourth annual meeting of the World Health Organization (WHO) Working Group for Parkinson’s in 2000, he founded the Parkinson’s Disease and Movement Disorder Society (PDMS) with experts from Mumbai, Kolkata, Delhi, Hyderabad, Nashik, Pune, Goa, Bhavnagar and Bengaluru pledging to help the cause. Along with its team of neurologists, psychologists, physiotherapists and various medical, allied medical and fitness professionals, PDMDS has extended its reach to cities throughout India. From the many invitations, PDMS has received worldwide recognition.
Medical Degree and Training
After attending school at Mount Abu and premedical studies at Maharaja’s College in Jaipur, he studied medicine at the Grant Medical College and Sir. J.J. Group of Hospitals in Mumbai. He obtained his medical degree 1956 and residency in 1959. After his initial training in Neurology in Mumbai, he went abroad for further training at the UCL Institute of Neurology in London. During his training in the United Kingdom, he obtained training certificates from Edinburgh and London in the early 1960s. He was made a Fellow of the Royal College of Edinburgh in 1973 and Fellow of the Royal College of London in 1985.
Over the course of his professional life, Dr. Singhal has trained over 200 neurologists who are now providing care across India. He has published over 200 scientific papers in both national and international books and journals. He is known for his interest and work in Parkinson’s disease and other motor disorders like Huntington’s disease.
He was the president of the Neurological Society of India (1986), president of the Indian Epilepsy Association (2000-2002), member of the WHO working group for multiple sclerosis and Parkinson’s disease, regional director for the World Federation of Neurology (2005-2009), and chairperson of the Asian Section of The Movement Disorder Society (2009-2010). In order to update neurologists on recent advances in neurology, Dr. Singhal created the ‘Neurology Foundation’ in 1996, and holds ‘Neurology Update’ meetings every alternate year.
Dr. Singhal established the Parkinson’s Disease and Movement Disorder Society in 2001, which he now serves as Honorary Secretary. This society has been acknowledged as a model for developing countries by organizations like the World Parkinson’s Congress and the World Federation of Neurology.
To make appointment and direct inquiry to Dr. Singhal, please refer to his contact form on Parkinson’s Disease and Movement Disorder Society’s contact form.
There is limited information on Huntington’s disease in China. However, in 1992, researchers at the Chinese University of Hong Kong published Huntington’s disease in China: A hypothesis of its origin. As with many other non-European populations, HD’s origins in China’s coastal provinces indicate that it likely spread as a result of interactions between European and Chinese traders.
Between 1984 and 1991, the prevalence of HD in Hong Kong was 3 to 7 patients per million. This population appeared to be predominately males who experienced an earlier disease onset. The first instances of HD were noted in 1959 and again in 1962. Historically, war and natural disasters disrupted living patterns and caused mixing of populations that increased the prevalence of HD outside of the original coastal provinces. However, compared to other regions, the spread of HD in China is rather limited and has remained predominately in these coastal regions.
This research is over 20 years old. More comprehensive statistics are needed to understand the true prevalence of the disease, particularly the prevalence of HD in women as this population is most likely underreported due to their status in society in the 1980’s and 1990’s.
Chinese Huntington’s Disease Network
The Chinese Huntington’s Disease Network was launched on December 10, 2011 in Shanghai. This organization seeks to help the estimated 300 affected families in the region by increasing awareness about HD and improving quality of care.
For Further Reading^
Leung, C. M., et al. “Huntington’s disease in Chinese: a hypothesis of its origin.” Journal of Neurology, Neurosurgery & Psychiatry 55.8 (1992): 681-684.
HD in Asia: Overview
This section of Global HD aims to highlight regions within Asia in which the HD populations have been studied, and where history and significance within the HD context have been demonstrated.
The prevalence of HD in the West is estimated at five to ten people per 100,000 people. However, in Asia, the prevalence of HD is approximately one tenth of the HD prevalence in Western population. The prevalence is 0.4 per 100,000 people in Hong Kong and 0.65 per 100,000 in Japan. In India, there are case reports from Punjab and northern India and until 1990, there were 69 case reports of HD in China. In Southeast Asia, the epidemiology data for HD consists mainly of case reports with HD in Singapore being reported from a Chinese family and second-generation Indian families. There is no accurate data obtained from Thailand, Indonesia and Philippines.
The reason for this wide variation in HD prevalence in different ethnic communities is unclear. Some people advocate a European origin for the mutation, suggesting that migration and inter-racial mixture of genes led to a lower prevalence in non-European countries. As mentioned in the HD in Hong Kong section, it has been proposed that the prevalence of HD in Hong Kong maybe attributed to a European origin. This assumption derives from the fact that the ancestors of the families with HD can be connected to coastal provinces with histories of strong colonial presence. Hence, it has been hypothesized that HD in other Chinese related countries may also have originated from a common Caucasian ancestry by ways of migration.
HD Spotlight in Asia
Professor Areerat Suputtitada, M.D. — Leading Rehabilitation Physician in Thailand
Dr. Areerat Suputtitada is Professor of Rehabilitation Medicine, full time working faculty at Chulalongkorn University and King Chulalongkorn Memorial Hospital in Bangkok, advisor of the editorial board of Thai Rehabilitation Medicine Journal, and an educational board member of Exercise and Health Promotion in the Ministry of Public health. She received 15 national awards, 3 international awards, and published more than 20 international and 30 national articles in the areas of her experts including neurological rehabilitation, spasticity and dystonia, gait and motion, and pain. She has also been invited to lecture and act as a chairman for over 70 international conferences. Dr. Suputtitada has been elected and appointed to important positions in the International Society of Physical and Rehabilitation Medicine (ISPRM) such as the Chair of Women and Health Task Force and International Exchange Committee. Moreover, she is the youngest physician to have won the Fund Award for Professorship in Thailand.
Medical Degree: Faculty of Medicine, Siriraj Hospital, Mahidol University, Bangkok, Thailand
Thai Board of Physical Medicine and Rehabilitation: Chulalongkorn University, Bangkok, Thailand
Training Certificates: Mount Sinai Medical Center, Colorado Neurological Institute, Vienna University Hospital, Western IRB, Gait and Clinical Movement Analysis Society in London, the Association of Pain Therapy in Switzerland, Australian Institute of Ultrasound, American Academy of Physical Medicine and Rehabilitation, Rehabilitation Engineering and Assistive Technology Society of North America, and Collaborative Institutional Training Initiative at the University of Miami.
Email: firstname.lastname@example.org, email@example.com
Primary Research Interest/project:
Her areas of expertise include neurological rehabilitation, spasticity and dystonia, clinical neurophysiology, pain, Botulinum toxin, therapeutic exercise and rehabilitation engineering. She treats a variety of patients, including patients with motor disorders like Parkinson’s disease and Huntington’s disease. Examples of her research includes:
- Cueing Device For Improving Gait Ability in Parkinson’s disease and Other Motor Disorders
- Extracorporeal Shock Wave Therapy (ESWT) For HD Patients Rehabilitation
Huntington’s Disease (HD) is a rare inherited disorder that breaks down nerve cells in the brain over time, affecting the patient’s behavior and movement. In its early stages, HD symptoms can vary among patients. Mood swings are a common early symptom and HD patients may become depressed, irritable, apathetic, or angry. In some cultures, psychological disorders that also have a motor component, such as Huntington’s Disease (HD), Tourette syndrome and schizophrenia, can result in the individual being labeled as possessed. The notion of possession, in which a person becomes demonized, possessed, or controlled by a demon, was present in many ancient religions and is still present in many beliefs today. To drive out the demons or evil spirits, family members or religious figures turn to exorcism. An exorcist is typically someone of religious faith who is thought to be able to channel benevolent powers and cast out evil spirits from otherwise good people. The concept and practice of exorcism crosses cultural and historical boundaries.
In Catholicism, priests undertake prayers for repentance, divine intervention and protection before engaging in ceremony. The patients then undergo counseling to enhance their spiritual life after the ritual. Buddhist exorcism involves prayer and meditation to persuade the spirit to leave the body. Taoists mainly use chanting, praying, and physical movements to drive away the evil spirits. Among Muslims, the belief of demon possession is not universal. Mr Nazirudin Mohd Nasir, head of the Office of the Mufti at the Islamic Religious Council of Singapore, said, “We believe there are unseen creations of God such as the ‘jinn’ or spirits.” However, he added that although, “One could possibly be possessed by the unseen, but one should not simply blame everything on this. In fact, some people do not believe in possession, although they believe that the unseen exist.” For Muslims who do believe, however, he said that there were those in the community who specialized in the exorcism ritual.
As a case study for practiced exorcism, this paper will examine North Thailand Hill tribe Shamans. There are Lahu, Lisu, Karen, Hmong and Lawa hill tribes. Among these hill tribes of Thailand that migrated from southern China, Laos and Burma, Lisu hill tribal villagers believe in exorcism and possession. According to their belief, there are two beings that can take possession of a person, including the ‘phi pheu’ or tigers as well as ‘phu seu’ or vampires. The hill tribe believes that ‘tai’ or black magic that is implanted in the body of the afflicted person by another person causes many of the illnesses they experience. This object must then be sucked out by the shaman in order for the person to be cured.
While the process of exorcism varies across many cultures, the act of restraining the patient is common; and these restraints can sometimes lead to injuries. The illusion that exorcism works on people with a disease experiencing supposed symptoms of possession can be attributed to the placebo effect. However, there are 370,000 reported cases of people killed during exorcism and another 310,000 reported injuries. These numbers are an underestimate as there are still unreported fatal cases in many rural areas of developing countries where mental illness is stigmatized. Scientifically, demonic possession is not a valid psychiatric or medical diagnosis recognized by either the DSM-V or ICD-10. Patients with symptoms associated with physical or mental illness can be mistaken for victims of demon possession. For example, a shaman beat a mother of two from Thailand with a dried stingray tail because the family had suggested it as a way to rid of her mental illness (later revealed to be a form of motor disorder). Despite her efforts to flee, the shaman abducted her and continued until she died. Even though the shaman was later on charged with murder, this case study shows that the process of exorcism can be fatal and victims can been bound, beaten, burned, starved, and even tortured.
In conclusion, it is difficult to come by documentation of any outcomes of official exorcisms, harmful or beneficial. Exorcisms are supposed to be low-key. Although they are not necessarily a secret, exorcisms are not performed in public or in front of press representatives. However there have been reported cases that victims of exorcisms, whom the officials believe to have mental illnesses, had past away from the rigorous ritual. Therefore, it is imperative to raise awareness about treatments for mental disorder in areas where exorcism is prevalent and mental illness is a social stigma.
The family members of the HD patients have to cope with the knowledge that the patient will suffer from mental and physical deterioration while accepting the fact that the HD patients’ children are at risk of getting the disease. The risk of developing HD in an offspring of an affected parent is 50%. One such case of full-term pregnancy is reported. It merits attention because of rarity of HD and lack of reports on it from Central India. Therefore, a careful study of family history is indispensable in the assessment and understanding of HD as it enables the prediction to be made for the fetus during pregnancy in 90% of cases. The case report also emphasizes the need of detecting DNA polymorphism by chorion biopsy or amniocentesis to avoid transmission of HD gene to further generations despite of ethical issues, which may be raised.
A Case Report
A 35-year-old Indian woman with history of amenorrhea or absence of menstruation of 9 months and labor pains was admitted in private hospital. Her pulse was 80 per min, blood pressure 110/80 mm Hg she had no edema. The abdomen examination showed height of uterus to be 36 weeks, tense, tender with moderate uterine contractions. Fetal heart was recorded to be normal. She had characteristic involuntary choric movements. The diagnosis of HD was established due to presence of chorea and history of progressive dementia and emotional disturbance supported by a positive family history. Her paternal grandmother suffered and died of the same symptoms. The grandmother had one daughter and four sons, of which the daughter and one son have no symptoms whereas three sons suffered. The age of onset of the patient’s father was at the age of 38 years and death occurred 12 years after onset. In the second son, onset was at the age of 35 years and he committed suicide after suffering for 10 years. The third son is 40 years of age and still alive but with same symptoms. The patient has three brothers and one sister all less than thirty years of age without any symptoms. The onset of symptoms in the patient was at the age of 30 years. She has three daughters, 17 years and 15 years and a son 13 years old. She delivered normally a healthy male child. The postpartum period was uneventful. The doctors succeeded in convincing her husband to undergo vasectomy.
As the case denotes, normal pregnancy and delivery is possible in a patient suffering from HD. As the offspring are at a 50% risk of inheriting the disease, prediction of this risk is essential. The identification of a deoxyribonucleic acid (DNA) sequence G-8 on chromosome 4 showed close genetic linkage to HD. Over the years availability of new DNA markers more tightly linked to the HD locus than the G-8 probes has improved predictive accuracy for both pre-symptomatic and prenatal exclusion testing. Prenatal exclusion testing can be an ideal option for high-risk individuals wishing to procreate as HD trait shows vertical transmission through successive generations. Non-availability of such predictive tests in India and the added economic restrain are the limitations. According to a study by Harper on Genetic Testing and Family Structure shows that only when a specific test for the HD gene itself is available it may be feasible to make a prediction for an isolated subject without studying the family unit. Meanwhile families are likely to benefit from prediction along family structures. In conclusion, pre symptomatic and prenatal exclusion testing by genetic counseling definitively predicts the risk of HD. But the family structure will remain crucial for prediction, as the identification of HD gene in Central India seems to be some way away.
Here are some of the resources for genetic counseling in India:
- Genetic And Mental Retardation Clinic
of Paediatrics, AIIMS, New Delhi-110029
Phone number: 26588500
- Genetics Cell, Sri Ramachandra Medical College (SRMC) Porur, Chennai, India
- Surendra genetics Laboratory, Lloyd’s road, Royapettah, Chennai,India
- Genetics department, Manipal Hospital, Karnataka.
Gusella, James F., Nancy S. Wexler, P. Michael Conneally, Susan L. Naylor, Mary Anne Anderson, Rudolph E. Tanzi, Paul C. Watkins, Kathleen Ottina, Margaret R. Wallace, Alan Y. Sakaguchi, Anne B. Young, Ira Shoulson, Ernesto Bonilla, and Joseph B. Martin. “A Polymorphic DNA Marker Genetically Linked to Huntington’s Disease.” Nature 306.5940 (1983): 234-38. Web.
Harper, P. S., and M. Sarfarazi. “Genetic Prediction and Family Structure in Huntington’s Chorea.” Bmj 290.6486 (1985): 1929-931. Web.
Wasmuth, John J., Jeffrey Hewitt, Barbara Smith, Denis Allard, Jonathan L. Haines, Douglas Skarecky, Eric Partlow, and Michael R. Hayden. “A Highly Polymorphic Locus Very Tightly Linked to the Huntington’s Disease Gene.” Nature 332.6166 (1988): 734-36. Web.
Malaysia is a multicultural country with three main ethnic populations. The indigenous Malaysians, Chinese and Indians make up approximately 62 percent, 29 percent and 8 percent of the population respectively. The prevalence of HD is 0.0024 per 10,000 people, based on seven reported cases.
To test the hypothesis that HD in Asia has a Caucasian origin, a HD registry was established in Malaysia in 1995 at the University of Malaya Medical Centre, Kuala Lumpur. Within eighteen months, the registry had identified seven unrelated patients with HD. From these individuals, there were four Chinese, one Malaysian and two Indians. Despite the previous hypothesis set forth that HD in Asian countries originated from Europe; only one Chinese patient, out of selected seven patients, had possible Irish ancestry. Moreover, there are several social and cultural reasons that the hypothesis set forth is likely to be false. The remaining three Chinese participants did not have any relatives with Caucasian features. Culturally, Chinese women were forbidden to have close contact with foreigners. Women did not travel unless they were accompanying their husbands. Prostitution as a profession for women was deeply despised and extramarital sexual contact was strongly forbidden. Hence, it was highly unlikely that female ancestors of these patients would have sexual contact with asymptomatic Caucasian HD men and therefore result in the mixing of genes. In addition, other participants also did not have European origin, since one Malaysian patient was a local while the two Indian patients originated from Tamil Nadu and Punjab in India respectively.
There is also evidence against the European migration hypothesis from the current genetic literature. Although the nature of the abnormal trinucleotide repeats of the HD gene in Chinese patients is similar to that in Caucasian HD patients, a majority of the tested Chinese patients have a small number of excess CAG repeats. Additional genetic evidence show that there are seven CCG repeats adjacent to IT15, or the Huntington Gene, in Asians but ten CCG repeats in Caucasians. The distribution of the CCG repeat adjacent to IT15 is of seven repeats in Asians and 10 repeats in Caucasians. The distribution of the CCG repeats differs among populations of low prevalence and the west. Therefore, mutation of the IT15 gene rather than the European migration hypothesis is likely to be the explanation for the variation in Malaysian prevalence of HD.
The interim results of the Malaysian HD registry have shown that HD exists in all major racial groups in Malaysia, with all cases exhibiting an excess of CCG repeats. The theory that Caucasian migration led to genetic mixing and a resulting low HD prevalence in Malaysia is less plausible according to the data collected by the registry; more likely, cases of HD in Malaysia arose due to a separate mutation of the HD gene. Nevertheless, because only seven HD patients were identified, these conclusions should be considered with caution to avoid errors in assumption and generalization.
The Global HD research and articles received partial support from the Bingham Fund for Innovation in the Program in Human Biology.
Resources in Malaysia^
University of Malaya Medical Centre in Kuala Lumpur
In 1995, a nationwide HD registry was established at the University of Malaya Medical Centre, Kuala Lumpur. The Medical Centre is one of the major public tertiary referral hospitals. It keeps reports of clinical and genetic studies of the patients seen since the setting up of the Registry.
For more information regarding the association, please visit: http://www.ummc.edu.my/view/index.php