Consanguinity and Sickle Cell Disorders (SCD)

Sickle Cell Disorders

Sickle Cell Disorders

Central India, home to some of our remaining jungles is inhabited by tribal people. Their healthcare is a matter of concern for HERD Foundation which is making inroads in this direction. We are especially concerned about rampant anemia among these populations. What is more worrisome is that debilitating conditions get worse due to prevalence of Sickle Cell Disorders (SCD) in communities settled here.

These problems are severe in tribal children that makes it essential to ascertain how ubiquitous the disorders are, as well as to gain understanding about their nutritional status. In the course of our work in these parts we know SCD is omnipresent and that anemic conditions are severe, especially in the case of girls. Studies reveal that among children, about 40% females and 27% males are anemic. Many findings suggest high prevalence of anemia in tribal populations.

We know full well that sickle cell anemia has no available cure. What can be done is only manage the symptoms and treat patients for improving on anemic conditions. Complications of the disease are found in both children and adults. Sickle cell anemia varies from person to person. Some people who have the disease suffer from chronic pain or constant fatigue.  Proper care and treatment are needed to improve the quality of life and facilitate reasonable health.

SCD is a genetic disease that one is actually born into. This hereditary disease is a death knell for people who are forced to bear with it until their imminent death that often comes early. People live up to forties, fifties or sometimes longer. Sickle cell anemia is a type of anemia in which blood has lower than normal number of red blood cells. The condition can occur even if red blood cells do not contain enough hemoglobin.

In sickle cell anemia, the abnormal sickle cells usually die after only about 10 to 20 days. The bone marrow cannot make new red blood cells fast enough to replace the dying ones. The lifelong disease is inherited by two genes of sickle hemoglobin—one from each parent. People who inherit a sickle hemoglobin gene from one parent and a normal gene from the other parent have a condition called sickle cell trait. This occurs through mutation (abnormal change) in the gene that instructs the body to produce hemoglobin.

Sickle cell gene is inherited or passed on between family members and is commonly passed on through defective genes from both parents. This can be diagnosed through a blood test. Actually it is consanguinity or marriages within families, a common occurrence in these communities that causes the genetic disorder. Pre-marital counseling on consanguinity is therefore very important for these consanguineous populations to break the pattern.

SCD Hot Spots - Prevalence in India

SCD Hot Spots – Prevalence in India

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World Braille Day

World Braille Day

World Braille Day

Most countries observe World Braille Day on January 4, being the birthday of its inventor Louis Braille. This day recognizes his significant contribution that has been assisting blind people to be able to read and write. Several organizations celebrate the day to create awareness about the challenges faced by visually impaired people. Many schools also mark the day to share its history for the benefit of students.

Braille is a code using bumps and indentation on surfaces that represent letters. They are recognized by touch and Louis Braille, blinded in an accident when he was only 3 years of age, invented it. Up until his discovery the Haüy system that had embossed Latin letters on thick paper or leather was used. But it was a complicated system requiring rigorous training and could only be read and not written.

This encouraged Braille when he was only 15, to invent the Braille code. Today we have several different versions of Braille. Since it is basically a code, all languages and even subjects like mathematics, music and computer programming can be read and written in Braille! This has been critically instrumental in the lives of millions of blind people to study and access literature.

It has been 200 years now since blind people have been facilitated to read and write using Braille.  This tactile alphabet system has letters, numbers and symbols for most languages in the world.  For blind students Braille is the key to attaining knowledge, literacy and employment. The world owes it to the young French man enrolled in the Royal Institution for Blind Youth, Paris who so wanted to read books just like other children, that he created a tactile alphabet to enable him easily to read and write!

The Marrakesh Treaty, an international copyright agreement ratified by 20 countries allows Braille books to be produced without copyright permission. The Treaty allows libraries for the blind to share accessible versions of books across borders without copyright permission. Till date the Marrakesh Treaty has been signed by 81 countries. The World Blind Union a global organization effective in 190 countries represents over 285 million blind or partially sighted people worldwide.

HERD Foundation encourages everyone to understand the importance of human right for all people who are blind, visually impaired or otherwise print disabled, to be able to access and facilitate access to published works. The organization remembers and recognizes Louis Braille for his simple yet effective invention that made it possible for blind people throughout the world to read and write.

January 4 - World Braille Day

January 4 – World Braille Day

Vision Impairment & Correctable Disabilities

Magnitude of The Problem

Magnitude of The Problem

HERD Foundation works periodically through affiliated medical institutes for correction of disabilities. In the past we have done far-reaching work on lip-cleft surgical repair interventions. We are now keen on working on vision impairment for teaching communities to maintain eye health. We look ahead to embrace the challenges in this connection that hopefully will serve in servicing people with vision disabilities.

We reinforce positive attitudes to look on persons with visual impairments to be included for these services. In the hope of creating user friendly approaches for people with visual impairments we have been ruminating to understand that very many visual disabilities are correctable conditions. This would mean we could promote an inclusive world in which all persons with disabilities enjoy their human rights and achieve their full potential.

HERD Foundation visualizes doing this in three ways. We are working on partnerships that support medical care for vision disabilities and for prevention of conditions lead to impairments. We will improve access to healthcare, education and rehabilitation services for people in need of vision care. We want to be part of efforts that mainstream visual disability in all aspects and to empower persons with these disabilities.

It is on humanitarian grounds that HERD Foundation wishes to take an active role in the communities through their inclusion for such development projects, and to involve them in all such initiatives that will benefit them. Disabilities can thus be addressed by good Samaritans to benefit people facing barriers in finding solutions to their vision related health problems.

Our hope is to assist disadvantaged people suffering from impairments. It is really essential to help such people as they do not know that they can be treated and rediscover the full potential of their limitations. This means that HERD Foundation will offer support and play a role in breaking down prejudice towards people with disabilities.

Imagine a situation where a person with correctable visual impairment is further disabled by the attitudes of others around him. Such people can be readily treated rather than facing isolation, mistreatment and maybe even ridicule. HERD Foundation seeks to improve access to eye care, eye-care education and rehabilitation services for persons with visual impairments. We want to mainstream this disability in all aspects of empowerment for the afflicted persons.

Facts about Visual Impairment:

  • Worldwide, 285 million people are visually impaired due to various cases; 39 million of them are blind.
  • 121 million are visually impaired because of uncorrected refractive errors (near-sightedness, far-sightedness or astigmatism). Almost all of them could have normal vision restored with eyeglasses, contact lenses or refractive surgery.
  • 90% of visually impaired people live in low- and middle-income countries.
  • 51% of all blindness is due to age-related cataract, the leading cause of blindness. (Statistics taken from World Health Organization website)
Visual Impairment

Visual Impairment

Status of Eyecare Health in India

Stand Alone Eye Clinics - Need of the Hour

Stand Alone Eye Clinics – Need of the Hour

Our country is the second most populous in the world, having 23.5% of the world’s blind population. The prevalence of blindness and visual impairment remains a major problem. Cataract, corneal opacities, glaucoma and posterior segment conditions are key reasons for blindness. These conditions can be treated only by skilled eye doctors in a hospital setting. We need to establish evidence for occurrence of eye problems by conducting baseline surveys to understand precise prevalence of specific conditions.

A national program for control of blindness was started in 1976 in India. Unfortunately it has not been possible to generate enough information for all of the country. However detailed information has been gathered in certain areas through research studies by concerned eyecare agencies. All such studies have shown that prevalence of cataract as the most common cause of blindness. Up until quite recently prevention of blindness was therefore largely cataract-focused.

Of late now ophthalmologists are being trained to increase emphasis on focusing on other critical causes of blindness like refractive errors, childhood blindness, corneal blindness and glaucoma. An ophthalmic workforce and infrastructure survey was undertaken to provide a valid evidence base for human resource and infrastructure requirements for elimination of avoidable blindness. This was the first time that such an extensive survey has been undertaken.

The study was conducted by Ophthalmology Cell, Ministry of Health and Family Welfare, Government of India from April 2002 to March 2003. Pre-tested questionnaires were administered to all district-level blindness officials and ophthalmology training institutions and supplementary data sources were used too. Data analysis and projections of existing ophthalmologists and dedicated eye beds were made for the entire country using the mean, median and range for each individual state.

The study ascertained that more than half the eye care facilities were located in the private sector. Sixty-nine per cent of the ophthalmologists were employed in the private and non-governmental sectors. 71.5% of all dedicated eye beds were managed by these two sectors. Five states -Maharashtra, Uttar Pradesh, Karnataka, Andhra Pradesh and Tamil Nadu had half the practicing ophthalmologists in India. There was a wide disparity in access to ophthalmologists and dedicated eye beds across the country.

In order to meet these requirements India will have to work hard to achieve the goals of Vision 2020. Some states and certain regions will be needing special attention. Instead of an across-the-board increase in ophthalmologists and eye beds, regions which are deficient will need to be prioritized and concerted action initiated to achieve an equitable distribution of available resources.

Shockingly, as per this study an estimated 9031 ophthalmologists worked in eye care facilities in our country. Of these 69% (6235) worked in the private sector and 31% (2796) worked in government sector. This clearly shows the disparity in availability of ophthalmologists. We need to increase the efficiency of eye care system in India by increasing the availability of ophthalmologists. Also we need to generate more eye doctors and eye specialists. It is only appropriately skilled ophthalmologists and trained technical staff that can respond to eyecare health in India.

Preventable Child Blindess

Preventable Child Blindness

Gondwanaland: Our Land – Our People

Adivasis Rights

                                      Tribal Futures At Stake

Central India as we all know is home to Adivasis or aboriginal tribes who are rightly ascribed as India’s first people. The land here is home to India’s richest concentration of natural resources. In recent years national and international market forces have been trying to gain control over land, water, forest and mineral wealth of the region. This exploitation has affected the well being of indigenous and marginalised community’s dwelling here.

It is very important to preserve the land as well as the people who reside here as they are part of the larger anthropological legacy that we have inherited. The Pangaea continent called Gondwana was so named by Austrian scientist Eduard Suess, to really venerate the Gondwana region of central northern India. The term comes from the Sanskrit Gond-Vana meaning ‘Forest of the Gonds’.

The now well-accepted theory of the continental drift tells us that during the Jurassic age, Gondwana continent began to break up by accompanying massive eruptions of basalt lava from East Gondwana, Antarctica, Madagascar, India and Australia and had Africa separating off in another direction resulting in open marine conditions. In time even East Gondwana began to separate when India began to move northward.

The Indian Plate collided and buckled with Asia to create the Himalayas. Even today, they say, the Himalayas are rising by an inch every year! The theory of the continental drift and tectonic plates tells us of movements of the Earth’s continents as also the ocean beds. The continuity of glaciers, deduced through glacial striations and tillites deposits suggested the existence of the supercontinent of Gondwana that was central to the concept of continental drift.

The present locations of the continents had previously been in dramatically different places and had also been contiguous with each other. The Gonds are the most important of the non-Aryan or primitive tribes of the Central India region and are important human species. They have been vividly described in the book ‘The Tribes and Castes of the Central Provinces of India–Volume I’ authored by R.V. Russell. The book includes their description in great detail with regard to social customs, information on villages, houses, dress, food and manner of life.

Modern day India seems to have abused the living situation of its aboriginals and merely given lip service to their right over their land. They have involuntarily been forced to acquiesce to their holdings over their land for both rightful and wrongful reasons. Whether it is in the name of conserving forest tracts or allowing greedy corporations to mine minerals (hand in glove with governments), the Adivasis rights to their land has been compromised for the longest time. Only until very recently after the Panchayat Extension to Scheduled Areas Act (PESA) passed in 1996 (a very important piece of legislation for Adivasis) have we established special provision for tribal peoples under such scheduling.

This Act extends to the Panchayats of tribal areas of nine states – Andhra Pradesh, Chhattisgarh, Gujarat, Himachal Pradesh, Jharkhand, Maharashtra, Madhya Pradesh, Orissa and Rajasthan. The Act intends to enable tribal society to assume control, preserve and conserve their traditional rights over natural resources. However PESA has been grossly violated and not upheld by many states, especially the minerals and natural resource rich areas. Market forces continue to unleash their onslaught on land grabbing for lucrative earnings.

The Adivasis are experiencing great disillusionment not only by state governments but with the Government of India too. We are not able to contain corporate greed nor to understand that natural resources are the tribals customary rights, their right to life and livelihood to which they have full constitutional right. Corrupt corporations join hands with corrupt states to continue to destroy India’s vibrant natural heritage and mineral wealth.

Tribals Rights

                       Panchayat Extension to Scheduled Areas Act

Sickle Cell Disease In Vidarbha Forest Areas

Sickle Cell Disease

Sickle Cell Anemia Disease Among Our Tribal Populations

The tribal belt in which HERD Foundation operates is well known for people suffering from sickle-cell disease. The disease is said to be a severe hereditary form of anemia. What happens is that a mutated form of hemoglobin distorts red blood cells into crescent shapes having low oxygen levels. It has been found that it is commonest among those of African descent.

Sickle cell anemia is the most common form of sickle cell disease or SCD. It is a serious disorder in which the body makes sickle-shaped red blood cells. Normal red blood cells are disc-shaped and move easily through blood vessels. They contain an iron-rich protein called hemoglobin that is carries oxygen from lungs to the rest of the body.

In sickle cells abnormal hemoglobin causes cells to develop into crescent shaped sickle cells that are stiff and sticky. They tend to block blood flow in blood vessels of limbs and organs. Blocked blood flow causes pain and organ damage and can raise risk of infection. Unfortunately sickle cell anemia has no widely available cure. But treatments improve anemia and lower complications by alleviating symptoms and complications.

Doctors have learned a great deal more about sickle cell anemia. They know its causes, how it affects the body and how to treat many of its complications. Sickle cell anemia may actually vary from patient to patient. With proper care and treatment people can have improved quality of life and reasonable health. Because of improved treatments and care, people having sickle cell anemia now have longer age expectancies.

Symptoms of the disease include chronic pain or fatigue. Sickle hemoglobin is highly prevalent in Vidarbha region with prevalence rate of 4-40%. It has variable clinical presentation and most patients remain asymptomatic for longer periods. Less numbers of deaths are reported due to this cause because of ignorance of autopsy surgeon in considering this disease as a cause of death despite of its high prevalence.

Sickle hemoglobin is prevalent among tribal populations of central, southern and western India. Its variable frequency ranges from 10-23%. Increased prevalence is reported in non tribal communities of these areas too. Maharashtra and Madhya Pradesh show higher prevalence of this disease. Actually Central India region is a focus of sickle cell disorder and the prevalence in Vidarbha region of Maharashtra ranges between 4-40% with average sickle cell gene frequency being 4.3%.

Sickle Cell Disease

Sickle Hemoglobin is Highly Prevalent in Vidarbha Region

HERD Foundation Medical Clinic in Pauni – The Outbacks

Pauni Clinic

                                  HERD Foundation & Lata Mangeshkar Hospital Out-Patient Clinic Inauguration at Pauni

HERD Foundation and Lata Mangeshkar Hospital established a new medical clinic in Pauni, Ramtek District that primarily serves low-income tribals and villages settled around here. Word of mouth publicity steadily draws patients in large numbers to the clinic that sits by the highway road in the main bazaar of Pauni. Initially being run three days a week – Mondays, Wednesdays and Fridays, patients line up well in advance at the open space in front of commercial building standing just off the road.

An opening ceremony took place on September 9, 2014 for this new Out-Patient Department Clinic located on the Highway No. 7 at the Main Bazar of Village Pauni, 75 kms from Nagpur. The clinic inaugurated by Smt Roopatai Deshmukh and Vice-Dean Dr H. Kanade, NKPSIMS had local panchayat members, HERD Foundation staff and local people present for the inaugural function. Villagers looked happy that they were to get access to medical services in their village.

HERD Foundation is locally well-known because of the series of medical camps that were undertaken in the region. Looking at the dearth of medical services and on insistence of local people the decision was taken to open a local clinical center offering check-ups, diagnosis and treatment options through services of in-house doctors. The clinic hours are 10:00 to 02:30 in the afternoon. But in reality we get such a flow of patents that doctors are busy till five in the evening.

The team of doctors is experienced, compassionate and well versed in public health services who are working hard to get the patients on the road to recovery. Serious patients are assisted in getting immediate medical attention at Lata Mangeshkar Hospital at their varied departments as the case maybe – Medicine, Obstetrics & Gynecology, Pediatrics, Orthopedics, Ophthalmology, Surgery, Dental and ENT Departments. For the nearly 400 patients checked on six days in the clinic that opened just two weeks back, there’s been much relief.

The clinic is proving to be useful in this remote region for the largely tribal population availing of medical services. The clinic aims at providing primary care to tribal belt of patients whose numbers keep surging. The larger-than-expected numbers proves the need for such assistance in an area where there is severe shortage of doctors, nurses and primary care health providers. They get ready access to specialist doctors, to even receive emergency care in needed cases.

The Pauni Clinic is a community health center operated by HERD Foundation that’s been set up after a bit of redesigning to make healthcare more accessible to patients living in remote forested areas. Our goal is to extend medical services for these neglected people in a region where primary health care is nearly non-existent. Right now it’s looking to be a great venture and we feel sure that it will be a success. Its working great and we know for sure that in the times to come, we would have done a remarkable service.

Access to Medical Services

                                                           Patients Surging With Each Passing Day