Learn About Sickle Cell Anaemia
Sickle Cell Anaemia And Mortality Rate
Sickle Cell Anaemia is the disorder of RBC’s, wherein the RBC collapses and is present in blood in Sickle Shape resulting in less oxygen carrying capacity resulting in hypoxia in body leading to severe muscular and joint pains, at times Vaso – Occlusions occurs resulting in choking of various arteries leading to a heart stroke like situation. Patient is constantly on pain killers and different vaccines and antibiotics as he/she is prone to secondary infections due to low immunity. In few states in India mortality rate has gone up by 20% and in a state about 50% of the new born die before the age of two. India is seriously affected by this as the disease has now travelled from rural to urban India. For example, a city like Nagpur houses more than two lakh patients.
Sickle Cell Anaemia – A Permanent Disability
A sickle cell anaemia patient cannot live a normal life. As a child one cannot go regularly to the school due to pains and compromised quality of life; as an adult one cannot attend the office due to bad health and compromised immune system. Due to this the Govt of India has now included Sickle Cell Disease in Permanent Disability.
High Incidence In India
India has more than 50% load of the world, in term of patients and occurrence. The central India is the most affected part of India and also Hill stations especially where tea cultivation takes place as those places are marked by significant tribal population traditionally.
Madhya Pradesh has the highest load with an estimated number of 9, 61,492 Sickle Cell Traits and 67,861 Sickle Cell Disease patients. About 27 of the 45 districts in Madhya Pradesh fall under the sickle cell belt and the prevalence of Sickle Cell trait / disease varies from 10 to 33 per cent of tribal population.
In Maharashtra, the sickle gene is widespread in all the eastern districts, also known as the Vidarbha region, in the Satpura ranges in the north and in some parts of Marathawada. The prevalence of sickle cell carriers in different tribes varies from 0 to 35 per cent.
In the Wayanad district of Kerala, the entire tribal population of 1,25,000 individuals were screened. A very high prevalence of sickle Cell is seen in these tribes.(18.2 to 34.1%).
In Gujarat, the Dhodia, Dubla, Gamit, and Naika tribes have a high prevalence of Sickle Cell Anaemia (13-31 %). More recently very extensive population surveys have been done by the Indian Red Cross Society, Gujarat State Branch where 1,68,498 tribal’s from 22 districts were screened and the overall prevalence of sickle cell carriers was 11.37 percent.
Same way state like Tamil Nadu has occurrence from 0 to 35% , especially in Nilgris and Madurai sides of TN. Similarly Andhra Pradesh has about 0- 34.6 %, Telangana has 0 – 30% , Karnataka has 0 – 25%, Orissa 0 – 15 %, Jharkhand 0 – 35 % , West Bengal 0 – 20 %.
State like Chhattisgarh all the districts are affected and all 28 districts have Sickle Cell Anaemia patients and about 10 percent of the population is severely affected.
Lacunae in strategy to tackle Sickle cell Anaemia patients
- Ineffective State Government plans
- Gaps between schemes and the ground reality
- Patients are not guided and connected to the Govt. Agencies
- Majority of the NGOs working for this cause offer only Awareness Programmes and Screening Camps and not Treatment
- No state registry for sickle cell patients
- No health support for patients except in some cases, in crisis they receive help
- Lack of primary infrastructure to cater to the population for screening and medicine support
https://swasthya.tribal.gov.in
https://www.telegraphindia.com/science-tech/hammer-and-tongs-against-the-sickle/cid/1376824
As A Result
- Increased patient load, as lack of awareness leads to more children born with this life threatening disability
- Lack of regular screening programs for these patients at the state level or central level
- Central Screening Programs/Camps available for various disability programs never reach them
- Inadequate supply of medicines for Sickle Cell Anaemic patients
- Increase Mortality (Death) Rate by 20% in some states
- About 50% of children die below 2 yrs
- Excruciating pain even persuades some patients to self-immolate
So, looking at this data, Marhamm – Healing and Counselling Services run by Ek Ehsaas Foundation (EEF) Delhi has taken up the cause to work for sickle cell anaemia patients. As of now the treatments include medication, blood transfusions and rarely a bone-marrow transplant. Medications could be Narcotic, Chemotherapy, Vitamin and Blood Tranfusions. The million-dollar question is – How many ailing tribals from the remote parts of India can afford it or even have an access to it ?
Ek Ehsaas Foundation is of the view that when we can effectively manage this dreaded disease with a Phytomedicine developed in our country in 2016, why not just do it-for the ailing tribals who are part and parcel of the human resource of the country.
We have been witnessing encouraging results in managing these patients. The sickling is getting reversed by almost 70 to 94% in different patients and the patients are able to live a pain free and a good quality life. In short they too lead a normal daily routine. Pain episodes have subsided, no crises happened to these patients. Medicine is easy to take and has good patient compliance.
An appeal to my readers- as we are encouraged to see this response , we request you to assist, join and support us in this initiative Marhamm – Healing and Counselling Services to eradicate the sufferings of these patients in our country.
This project is very dear to our Honourable Prime Minister Narendra Modi. Modi ji is concerned about this disease and has pledged his support to this cause.
Nitin Bhasin (B.Pharm, M.D. in Alternate Medicines) has created a miraculous formula for SCA patients. He has mapped the country to trace the density of SCA patients. He has had numerous and extensive discussions with various stake holders, operating for making medicine accessible to the ailing un-registered population of our country. The information given above is also the result of his intensive study and research since 2015. Mr. Bhasin has conducted Screening Camps in Navsari in 2016, Counselling Sessions by Dr. Graham Sergeant (from Jamaica), Sickle Cell Day in Nagpur with Dr. Vinky Rughwani.
Ek Ehsaas Foundation (EEF) is grateful and committed to offer a platform for the tribal people/ NGOs/ various Government institutions to help/relief to the ailing people.
Reena Charles
Chairperson
Ek Ehsaas Foundation
(EEF) Delhi.
