20-26 June 2014 #712

Life with sickle cell

Little known genetic disorder that afflicts Nepal’s Tharu population needs urgent government attention

PATIENT PATIENTS: Basmati Chaudhary (seated far left) has been borrowing money to treat her son Anish (center standing) who has suffered from sickle cell disease ever since he was born.
The head nurse in the sweltering Bheri Zonal Hospital in Nepalgunj goes through patient files. She stops at one of them and says, “Every week we get a couple of new cases of sickle cell disease.”

Since 2011, the hospital has received numerous Tharu patients with chest and joint pains and recurring jaundice: common symptoms of sickle cell disease in which regular round red blood cells are replaced with sickle-shaped red blood cells which get stuck in the veins, deplete oxygen flow and cause severe body pain in patients.

In the past three years the number of patients diagnosed with sickle cell has increased to over 250. It is a genetic disorder inherited from both the mother and father, and afflicts the Tharu community in Nepal’s Tarai plains.

It is suggested that sickle cell disease is prevalent in areas affected by malaria because the gene for sickle cell provides its carrier with resistance against malaria. The Tharus who have a sevenfold lower prevalence of malaria than non-Tharus are indigenous to the Tarai.

Buddhi Ram Tharu (far left) and his son Deepak Tharu, seated next to his father, both are sickle cell disease patients. Buddhi Ram takes a bus to Kathmandu each month for his son’s treatment.
“When I first consulted my senior doctors, they did not believe the test results for sickle cell disease,” recalls Rajan Pande, the only doctor keeping track of the disease. “Most of my patients do not know about sickle cell disease. They come here, having previously been diagnosed with hepatitis, arthritis, and some come with no diagnosis at all.”

Pande took us to the ward to meet Moti Ram Tharu whom he diagnosed last year. His skin was yellowed by jaundice, arm firmly strapped to a steadily emptying IV. The 46-year-old office assistant from a village health post in Banke said he was diagnosed with Hepatitis B in Lucknow and took expensive medicines for two years.

“When I went back to Lucknow, they told me I tested negative for Hepatitis B," Moti Ram said.

Sickle cell disease is like diabetes because it requires long term care and medication. The family needs to manage the disease for life which is a severe financial burden for most Tharu patients.

Patients from Banke, Bardiya, Dang and Kailali travel for hours to buy their medications in Nepalganj. For others, such as Buddhi Ram Tharu, the trip doesn’t end there. Five years ago Buddhi Ram’s son Deepak was diagnosed with sickle cell disease in Kathmandu’s Teaching Hospital. Since then he has been making regular trips to Kathmandu for his son's required blood transfusions.

Moti Ram Chaudhary works at the village health post in Phatepur, Banke and is a sickle cell disease patient who was misdiagnosed with Hepatitis B.
“I come from a humble background, and going to Kathmandu every month is very expensive,” Buddhi Ram says. “How can I have the money to go every month? I am already Rs 700,000 in debt.”

Basmati Chaudhary, a mother of five, says her eldest son Anish has been sick since he was born. Anish is 27 now, and his family is heavily indebted. “We have a lot of loans and we are still taking out loans,” says Basmati. “Where do I get money for my son’s treatments?”

Anish’s younger brother has gone to India to earn money to pay for his brother’s treatment but his mother fears that even her younger son could be suffering from the same condition, as he complains frequently of joint pains.

Priyankar Chand, Emtithal Mahmoud and Rushika Pattni

The three authors are students at Yale University working on a pilot research and education project for sickle cell disease in western-Nepal.


What is sickle cell disease?

Regular round red blood cells in patients are replaced with sickle-shaped red blood cells which get stuck in the veins, deplete oxygen flow and cause severe body pain in patients. It is a genetic disorder inherited from both the mother and father, and afflicts the Tharu community in the Tarai.

In 2008, the UN declared sickle cell disease a global public health problem and dedicated 19 June to be World Sickle Cell Day. In Nepal, patients are demanding government support for awareness, diagnosis and treatment.

Read also:

10+2 for public health Kul Chandra Gautam

Highest priority Kul Chandra Gautam

A war on two fronts Rameswor Bohara

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