Raipur, Chhattisgarh – Thirty-three-year-old Ramnath Sahu looks visibly distressed. The day before, his four-year-old son, Kuldeep, was diagnosed with sickle cell – a hereditary disease affecting the red blood cells.
“Don’t worry my child, nothing will happen to you,” says Kuldeep’s 54-year-old grandmother, Ramvati Bai, as she caresses the boy in front of their home in the village of Akola, in Bemetara district.
Kuldeep’s seven-year-old brother, Harsh, was diagnosed with the disease last year.
According to a 2013 report by the Jawahar Lal Nehru Memorial Medical College in the state’s capital, Raipur, 10 percent of Chhattisgarh’s population is affected by the disease, with the state’s indigenous tribal population disproportionately affected.
A report released in December by the government-run State Health Resource Centre in Raipur says that 20 percent of one tribe – the Gond tribe – suffers from the disease.
And it can be more prevalent among lower castes, such as the Kurmi and Sahu, where according to Dr Praveer K Chatterjee, the executive director of the State Health Resource Centre, rates are at 20 and 22 percent respectively.
The fact that the disease can be fatal worries Sahu, who travelled 90km from his village to Raipur to get his son checked for it.
Sickle cell damages the haemoglobin, a protein in the red blood cells, affecting their capacity to carry oxygen, and patients can suffer from anaemia, jaundice, body pain, pneumonia and repeated infections that may result in paralysis.
“The sickle-shaped RBC [red blood cells] face erratic movement in blood vessels,” explains Dr PK Patra, the director general of the Sickle Cell Institute in Raipur.
“This stops blood carrying haemoglobin to reach to cells fast enough, thus resulting in severe pain or damage to affected areas.”
If not treated on time, it can cause death among children. And even when treated it can shorten life expectancy by at least 20 years.
“We very well know that it’s a life-threatening disease,” says Sahu, his brow wrinkled. “But we are striving to save their lives. We would go for any possible treatment.”
Each year at least 10,000 children die of sickle cell in the state, according to Dr AR Dalla, chairman of the Sickle Cell Organisation of India.
‘Our daughter died in front of our eyes’
At the Sickle Cell Institute in Raipur, a modern three-storey building located inside the Jawaharlal Nehru Medical College, there is a steady stream of patients. Damrudhar Jaal and his wife Yashoda have brought their two children – six-year-old Muskan and two-year-old Prithviraj – who have both been diagnosed with the disease for a routine check-up.
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The hospital-cum-research institute was founded in 2013 to cater to the large number of cases in the state.
From 2008 to 2016, the institute carried out a sample survey of children from birth to the age of 15 and found that 10 percent suffered from sickle cell.
The couple from the industrial town of Bhilai, 35km south-west of Raipur, have already lost two children to sickle cell anaemia, the most common and chronic form of the disease.
In 2009, when their one-year-old son, also named Harsh, died, doctors had suspected sickle cell as the cause.
Last August, when their four-year-old daughter Bharti complained of severe stomach pain, she was rushed to a local hospital. Jaal says doctors performed tests and found that she had sickle cell disease.
Distraught, he describes how his daughter remained on life support in an Intensive Care Unit for 12 hours.
“Our daughter Bharti died in front of our eyes and we could not do anything,” he says.
Lack of awareness
After performing Bharti’s last rites, Jaal had taken his remaining two children to the Sickle Cell Institute, where both tested positive.
“Now we are worried for our two remaining kids,” he says looking towards the sky.
An American physician named James Herrick first discovered sickle-shaped red blood cells in a medical student from Grenada in 1910. In 1949, an American Nobel Prize laureate Linus Pauling, and his colleagues proved that sickle cell was a molecular-genetic disease.
In India, the disease was first detected in 1952 among indigenous tribes in the Nilgiri Hills of south India. That same year, some migrant labourers working in the tea gardens of Assam state were also diagnosed with the hereditary disease.
Of Chhattisgarh’s 7.5 million strong indigenous tribal population, at least 20 percent, particularly among the Gond tribe, are affected by sickle cell disease, according to Dr Patra.
With the right treatment – antibiotics and pain relief medication – Dr Patra says people with the disease can live into middle or late adulthood. But detecting it on time can be difficult as there isn’t widespread screening of the state’s 27 million inhabitants. And a lack of awareness about the inherited genetic disorder is a serious obstacle to eradicating it.
For somebody to have sickle cell disease both of their parents must be carriers of the sickle cell trait. It is for this reason that Dr Patra suggests that instead of checking whether people’s astrological stars match before marriage, as is common in India, they should check that they aren’t both carriers.
“If both the bride and groom are SCD [sickle cell disease] affected then they should not marry,” he says. “If only one of them is affected then, there could be safe marriage.”
“The marriage between two carriers has a 50 percent chance that their child will have sickle cell trait [and a] 25 percent chance [that they will have] sickle cell disease ….”
As government health facilities are few and far between in the state, many people resort to practitioners of black magic for help with the disease.
But while acknowledging that there is a lack of awareness about the disease, the state’s health minister, Ajay Chandrakar, stresses that the government is working to eradicate it.
“Lots of work is being done in the health sector. We have ordered the officials to identify the sickle cell patients through [an] intense campaign. The results would be apparent very soon,” he says.
But Alok Shukla, a social worker who focuses on health issues in the state, is sceptical.
“Health has never been a priority of the government,” he says.
“The condition of [the] health sector can be assessed by a simple example: In [the] tribal dominated district of Kondagaon, there … [are] 22 health centres but surprisingly none of them has a doctor.”