COMBATING HAEMOPHILIA : SOME LESSONS FOR INDIA
DOI:
https://doi.org/10.29121/shodhkosh.v5.i6.2024.4902Keywords:
Disease, Hemophilia, Genetic Disorder. India, StrategyAbstract [English]
Haemophilia is a sex a linked heredity bleeding disorder that predominantly affects male population and while women are carriers of the affected gene. Approximately 4 lac people worldwide are affected with this disorder. The response to this disease involves a range of treatment interventions involving proper treatment protocol, physiotherapy and comprehensive rehabilitation programmes. however, budgetary constraints, geographical and socio-cultural factors overburden the process of delivering adequate treatment for hemophilia patients in different countries the socio-economic inequalities among the countries have been found to greatly influence the treatment, management and care of heamophilia patients. Thus, post industrialized nations have enough accessibility to various treatment resources, while as the emergent countries like India have excelled in the field of physiotherapy and rehabilitation programs. The authors are of the view that for optimal heamophilia treatment care and management, a comprehensive strategy involving multiple interventions is required. This paper aims to suggest a brief description of strategies required to achieve an optimal heamophilia care in India.
References
Ananyeva, Natalya M., Timothy K. Lee, Nisha Jain, Midori Shima, and Evgueni L. Saenko. "Inhibitors in hemophilia A: advances in elucidation of inhibitory mechanisms and in inhibitor management with bypassing agents." In Seminars in thrombosis and hemostasis, vol. 35, no. 08, pp. 735-751. © Thieme Medical Publishers, 2009. DOI: https://doi.org/10.1055/s-0029-1245106
Balgir, R. S. "Spectrum of hemoglobinopathies in the state of Orissa, India: a ten years cohort study." The Journal of the Association of Physicians of India 53 (2005): 1021-1026.
S Balgir, R. "Community expansion and gene geography of sickle cell trait and G6PD deficiency, and natural selection against malaria: experience from tribal land of India." Cardiovascular & Hematological Agents in Medicinal Chemistry (Formerly Current Medicinal Chemistry-Cardiovascular & Hematological Agents) 10, no. 1 (2012): 3-13. DOI: https://doi.org/10.2174/187152512799201190
Basu, Analabha, Neeta Sarkar-Roy, and Partha P. Majumder. "Genomic reconstruction of the history of extant populations of India reveals five distinct ancestral components and a complex structure." Proceedings of the National Academy of Sciences 113, no. 6 (2016): 1594-1599. DOI: https://doi.org/10.1073/pnas.1513197113
Chatterjee, Nirupama, Amit Mishra, Ravindra Soni, Hemant Kulkarni, Manju Mamtani, and Manisha Shrivasatava. "Bayesian estimates of the prevalence of β-thalassemia trait in voluntary blood donors of central India: a survey." Hemoglobin 34, no. 6 (2010): 548-560. DOI: https://doi.org/10.3109/03630269.2010.526488
Dye, Danielle E., Kate J. Brameld, Susannah Maxwell, Jack Goldblatt, and Peter O’Leary. "The impact of single gene and chromosomal disorders on hospital admissions in an adult population." Journal of community genetics 2 (2011): 81-90. DOI: https://doi.org/10.1007/s12687-011-0043-3
Ghosh, Kanjaksha, and Rinku Shukla. "Future of haemophilia research in India." Indian Journal of Hematology and Blood Transfusion 33, no. 4 (2017): 451-452. DOI: https://doi.org/10.1007/s12288-017-0862-4
Ghosh, K., S. Shetty, and D. Sahu. "Haemophilia care in India: innovations and integrations by various chapters of Haemophilia Federation of India (HFI)." Haemophilia 16, no. 1 (2010): 61-65. DOI: https://doi.org/10.1111/j.1365-2516.2009.02097.x
Gupta, Naresh, Abderrahmane Benbouzid, Meriem Belhani, Mohammed El Andaloussi, Khadija Maani, Yasser Wali, Soraya Benchikh El Fegoun, Hossam Ali Saad, and Johnny Mahlangu. "HAEMOcare: the first international epidemiological study measuring burden of hemophilia in developing countries." TH Open 3, no. 02 (2019): e190-e199. DOI: https://doi.org/10.1055/s-0039-1688414
Jain, Dipty, Khushnooma Italia, Vijaya Sarathi, Kanjaksha Ghoshand, and Roshan Colah. "Sickle cell anemia from central India: a retrospective analysis." Indian Pediatrics 49 (2012): 911-913. DOI: https://doi.org/10.1007/s13312-012-0217-z
Kar, Anita, Supriya Phadnis, Sumedha Dharmarajan, and Juhi Nakade. "Epidemiology & social costs of haemophilia in India." Indian Journal of Medical Research 140, no. 1 (2014): 19-31.
Lee, V. N., A. Srivastava, M. Nithyananth, P. Kumar, V. M. Cherian, A. Viswabandya, V. Mathews et al. "Fracture neck of femur in haemophilia A–experience from a cohort of 11 patients from a tertiary centre in India." Haemophilia 13, no. 4 (2007): 391-394. DOI: https://doi.org/10.1111/j.1365-2516.2007.01448.x
Marchesini, Emanuela, Massimo Morfini, and Leonard Valentino. "Recent advances in the treatment of hemophilia: a review." Biologics: Targets and Therapy (2021): 221-235. DOI: https://doi.org/10.2147/BTT.S252580
Mohanty, D., R. B. Colah, A. C. Gorakshakar, R. Z. Patel, D. C. Master, J. Mahanta, S. K. Sharma et al. "Prevalence of β-thalassemia and other haemoglobinopathies in six cities in India: a multicentre study." Journal of community genetics 4 (2013): 33-42. DOI: https://doi.org/10.1007/s12687-012-0114-0
Pratap, Rohan, Monali Misra, Varun N, Suman Morampudi, Anand Patil, and Jayachandra Reddy. "The existing scenario of haemophilia care in Canada and China-A review." Hematology, Transfusion and cell therapy 42, no. 4 (2020): 356-364. DOI: https://doi.org/10.1016/j.htct.2019.08.001
Srivastava, Alok, Elena Santagostino, Alison Dougall, Steve Kitchen, Megan Sutherland, Steven W. Pipe, Manuel Carcao et al. "WFH guidelines for the management of hemophilia." Haemophilia 26 (2020): 1-158. DOI: https://doi.org/10.1111/hae.14046
Stoffman, J., N. G. Andersson, B. Branchford, K. Batt, R. D’oiron, C. Escuriola Ettingshausen, D. P. Hart et al. "Common themes and challenges in hemophilia care: a multinational perspective." Hematology 24, no. 1 (2019): 39-48. DOI: https://doi.org/10.1080/10245332.2018.1505225
Tahiraj, Asllan. "Haemophilia care in Arabic countries compared to western European countries." PhD diss., lmu, 2012.
Verma, I. C., and S. Bijarnia. "The burden of genetic disorders in India and a framework for community control." Community Genetics 5, no. 3 (2002): 192-196. DOI: https://doi.org/10.1159/000066335
Wilkie, Andrew OM, Jo C. Byren, Jane A. Hurst, Jayaratnam Jayamohan, David Johnson, Samantha JL Knight, Tracy Lester, Peter G. Richards, Stephen RF Twigg, and Steven A. Wall. "Prevalence and complications of single-gene and chromosomal disorders in craniosynostosis." Pediatrics 126, no. 2 (2010): e391-e400. DOI: https://doi.org/10.1542/peds.2009-3491
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