DYSKINETIC CP

1. DYSKINETIC CP: SOCIAL CULTURAL
PERSPECTIVES IN THE CONTEXT OF
BANGLADESH
Prof Shaheen Akhter
Professor of Paediatric Neurology
Director, Institute of Paediatric Neurodisorder and Autism (IPNA)
Bangabandhu Sheikh Mujib Medical University (BSMMU)
Dhaka, Bangladesh
www.bsmmu.edu.bd
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2. Bangladesh Demography
• Area:147,610 square
kilometres
• Population: 163 million
• Rural: urban 2.3:1
• Age structure
• 0–14 years: 27.21%
• 15–64 years: 67.61%
• 65 and over: 5.18%
• Literacy Rate:
• 7 years and over
73.2%
• 15 years and over
73.9%
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3. Bangladesh
• Infant mortality rate: 24.73/1,000
• Neonatal mortality: 16/1000
• <5 years mortality: 29/1000
• Persons per Registered physician
1:17241
1 Bangladesh Economic
Review 2020
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4. Health care system in Bangladesh
Public health services
Non-government organizations (NGOs)
Private sector
Donor organizations
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5. Disability in Bangladesh
• Prevalence: 9% of total population1
1.4%2
• Prevalence in children: <1.4%-17.5%2
• Prevalence of CP: 3.4 per 1000 children (approximates to
~234,000 children of 166 million people)3
• Cerebral palsy: 71287 out of 15,78,387 disable population4
• There is more Dyskinetic CP5
• 1Household Income and Expenditure
Survey, 2010
• 2, Bangladesh population and housing
Census ,2011
• 3 Dev Med Child Neurol. 2019
• 4 Ministry of Social Welfare 2018
• 5 Pediatrics 2014
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6. ASD 6%
ID, 13%
Speech, 13%
Vision, 20%
Hearing,
9%
Physical 39%
Types of Disability
Based on census 2011
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7. 2 years Male
2nd issue
non-consanguineous parents
Urban: 8 km from a tertiary medical centre
Cannot sit without support
Cannot hold objects
Seizures -2 months
Feeding and swallowing difficulty
Born –home birth weight average
H/O delayed cry
No H/O of neonatal jaundice or seizures
dystonia Squint
GMFCS IV Mini - MACS V CFCS V
Case scenario 1
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8. • Lives with grandmother
• Father Governmental Employee
• Monthly income: 12000-14000 per month (140-165 dollar)
• Attended Institute of Paediatric Neurodisorder and Autism
in Bangabandhu Sheikh Medical University
• Diagnosed as Dyskinetic CP with Epilepsy
• Treatment
• Antiseizure drugs
• Developmental therapy
• Feeding advice
• Regular follow up
Case 1 (contd.)
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9. Case Scenario 2
10 years male
• non-consanguineous parents
• 3rd issue
• Rural :
• Stays at 65 kilometer, takes 60 mins by bus
• Occupation of Father: Farmer
• Mother: home maker
• Monthly income 5000-7000 taka/month (60-80 dollars)
• Inability to walk steadily till now
• abnormal movements-dystonia
• Impairment of Speech
• cognition average
• Feeding difficulty
• GMFCS III MACS II
• CFCS I EDACS II
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10. • No knowledge about the disease-
• ??curse ??Hope
• Assisted and motivated by a local NGO at 7 years
• Referred to Child Developmental Centre (CDC) in Government
Medical College Hospital
• Enrolled in CDC
• antidystonic drug given
• Developmental therapy
• feeding advice
• Walking aid given
• Advice for schooling
• Arrangement of allowance by the Government
• Doing well in school
• Has a dream to continue education
• No longer treated as a burden
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Case 2 (contd..)

11. Barriers for getting access to
management/treatment
Lack of Awareness
Financial burden
Access to education/social
participation
Social Stigma and discrimination
within and outside family
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12. Challenges
• Right to equity and nondiscrimination
• Right to health and rehabilitation
• Right to quality education
• Right to protection from exploitation, violence and abuse
• Right to participation in cultural life, recreation, leisure
and sport
• Right to humanitarian response in emergencies
UNICEF Bangladesh 2014
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13. Our Strengths
• Laws/acts to protect the rights and ensure safety of the differently able
persons by the Government of Bangladesh
• Rights and Protection of Persons with Disability Act, 2013
• Neurodevelopmental Disabled Persons Protection and Trust Act
2013.
 Established Child Development Centers (CDC)
 Establishment of Disability Service & help centre in all districts
 The Government of Bangladesh has introduced disability allowance of
monthly 750 Taka (USD 08.3/month) for person s/children with disabilities
 Allocated 1% quota in public sector employment.
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14. Acknowledgement
 To the families who were kind enough to use photos of children and
gave their time
 Dr Laila Arjueman, Paediatric Neurologist and beloved student who
helped me with information.
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15. Thank you
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