Dear Editor,
Genetic diseases are inherited through generations from parents to their progeny, though there is no treatment available to various genetic disorders. So, as of now only its proper management is done to control and prevent it. For its prevention genetic counseling, pre- marital counseling and prenatal diagnosis process are only the remedies existing. However these investigations are not available to common mass people as its too costly and due to huge population burden. Hematological genetic diseases include Thalassemia, Sickle cell anemia, Heamophelia, Thrombophilia, vonWillebrand disease, G6PD deficiency and many more diseases which take very large investment in its management. These genetic inherited hematological disorder required frequent blood and/or its component transfusion to the patient which is not possible for poor rural background people that leads to patient’s mortality. In heterozygous condition by genetic investigations we can avoid the marriage between traits by medical counseling by which homozygous conditions of the diseases are avoided and it remains traits in that conditions the person is healthy as this condition is asymptomatic. Vindhyan region is the developing part of Madhya Pradesh which contains large population of Brahmin, Kshatriya, Sindhi, Muslim, Patel, Yadav and many more Scheduled Castes and Scheduled tribes. Moreover due to lack of advance medical facility and illiteracy the option of genetic counseling is not available to the population for this region. Kol, Baiga, Pasi, and Khairbar are the representative tribes of Vindhyan region of Madhya Pradesh. Few literature available that depict the burden of Thalassemia, Sickle cell disease, HFE, Xmn1, Factor V, MTHFR, HMOX1, UGT1A1 and GST genetic mutation in these population of Vindhyan region [1–5]. Genetic testing of various hematological inherited diseases is necessary in the mentioned population to avoid the inheritance of homozygous condition. In April 2018, Government of India issued a gazette notification, in which it includes Thalassemia, Sickle cell diseases and Hemophilia under disability [6]. In the same line we conducted a disability assessment camp in Shyam Shah Medical College, Rewa in October 2018, where we identified 32 patients for issuing of disability certificates among registered 51 patients. Twenty-two of them were issued disability certificates by District disability board of Rewa District, which was first initiative of this kind probably in state of Madhya Pradesh. Remaining 10 patients were issued certificates from their respective district boards. We also conducted sensitization and screening camps in Sidhi, Anuppur and Shahdol districts of Vindhyan region where we screened more than 100 patients of these disorders for disability and also sensitized the local disability boards for the same. In the long run, it can become a mission covering almost all the children with these diseases not only in Vindhyan region but also in whole State of Madhya Pradesh for the betterment of these children.
Funding
This study is funded by Indian Council of Medical Research, New Delhi, India Research (Grant No. 45/2/2018-Hae/BMS).
Compliance with Ethical Standards
Conflict of interest
The authors declare that they have no conflict of interest.
Ethical Approval
All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki declaration and its later amendments.
Informed Consent
Informed consent was obtained from all individual participants included in the study.
Footnotes
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References
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