1. hungarian kidney foundation 2. institute of pathophysiology, faculty of medicine, phd school of...
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1. Hungarian Kidney Foundation2. Institute of Pathophysiology, Faculty of Medicine, PhD School of
Medical Sciences, Semmelweis University,3. Department of the Hungarian Congenital Abnormality Registry and
Surveillance, National Center for Healthcare Audit and Inspection,4. Avicenna International College, Budapest, Hungary.
László Rosivall 1,2, Miklós Molnár 2 Judit Béres 3, Shahrokh MirzaHosseini 4
Multiple Disadvanteged People, Hungarian Example
8th Conference of Kidney Disease in Disadvantaged PopulationsSatellite Symposium of the World Congress of Nephrology,
Victoria, British Columbia, Canada April 12th – April 14th, 2011
Gypsies in Europe
• Multiple arrivals in Europe from India centuries ago
• Different populations
• Stretching across country borders
• A number of genetic disorders seen
(assumed that galactokinase deficiency and the
congenital glaucoma mutations: Indian origin)
Roma Education Level in Hungary (%)
Subject Total Male Female
Incomplete elementary
30,2 24,2 36,1
Elementary 36,4 37,9 34,9
Vocational 20,6 26,6 14,7
High school 11,4 10,5 12,4
Higher education
1,3 0,9 1,8
Job Status Before Global Recession
Non-segregated
Segregated Getto
Just studies 6,1 3,8 2,7
Active Worker 31,0 28,2 13,9
Unemployed 30,8 36,8 44,2
Maternity leave 10,2 16,6 18,5
Pension 5,2 5,7 5,3,
Disabled 16,7 13,0 15,5
Frequent Genetic Diseases of Gypsies
• Primary Congenital Glaucoma (1/10000 vs. 1/1200), with strong regional differences
• Congenital Myasthenia Syndrome (AChR, epsilon mutation, almost exclusively in Roma population)
• Spinal Mucsular Atrophy• Inherited Limb Muscular Dystrophy (type 2C)• Epidermolysis Bullosa• Galactokinase deficiency• Glanzman Thrombasthenia
• Autosomal Dominant Polycystic Kidney (ADPKD 2 in a certain region x 20 higher)
Gypsies - Hungary
• One of the declared goals of Hungarian EU presidency is to address the integration issue of the Roma population all over the Europe.
East-North Hungary: A Sample Dialysis Center Data (B.Braun)
Total No patients: 222 (Gypsy: 14; 6%)
Hemodialysis Patients : 183 (11 Gypsy, 6%)
CAPD : 39 (3 Gypsy, 8%)
Background Disease:
•Diabetes mellitus : 6 pax
•Chronic Nephritis : 8 pax (3 TIN, 2 nephrosclerosis, 3 GLN)
Transplantation-Related Characteristics of Group A (Caucasians) and Group B (Gypsies)
Age, yr ± SD HLA mismatches ± SDGroup A (n = 1825) 42 2,89Group B (n = 93) 34 3,06
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Langer et al, Transplantation Proceedings, 37, 729–730 (2005)
Patient and Graft Survival in Group A (Caucasians)and Group B (Gypsies)
Caucasians Gypsies
% %
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Langer et al, Transplantation Proceedings, 37, 729–730 (2005)
30
40
50
60
70
80
90
sf12phys
sf12ment
Effect of KD
Burden of KD
Symptom
s
Sleep
Physical fntc
Emotional W
B
Energy/fatigue
Gypsys
Non Gypsys
Me
an
of
KD
QO
L p
oin
tQuality of Life inTransplanted patients
Score of different HRQOL domains in TransQoL-HU Study (n=1067) -2002
p>0.05 in all domains
There is not much difference (unpublished)
DepressionCESD score (median, IQR) from TransQoL-HU Study (n=1067) - 2002
p=0.06
0
5
10
15
20
25
1 2
p=0.06
Gypsy Non Gypsy
(Unpublished)
Further clinical observations
• ESRD more frequent, similar to Afro-Americans
• Recive blood transfusion from non-Roma blood donors
• Have many children, possibly from different fathers
• B blood group is more frequent among them
• HLA incompatibility is more frequent
• Cultural, social, economical disadvantage are contributory
factors
• Living kidney donors are recommended
ISU usage in MINIT-HU Study (n=993) -2007Immuno-biological Differences?
0102030405060708090
100
Gypsy
Non Gypsy
*: p<0.05
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