RED ALERT
THE WEEK India|October 06, 2024
In India's quest to control thalassaemia, the most crucial aspect is the availability of safe blood v
Mohit Sharma
RED ALERT

Nishtha Madan was diagnosed with thalassaemia when she was seven months old. "I wanted to overcome the limitations attached with the disease," says Madan, now 35, and a special educator and development psychologist with the department of education, Delhi. "The credit of keeping me healthy goes to my parents. When I became an adult, I started trying to make myself more aware of the disease."

Thalassaemia is a genetic blood disorder characterised by the reduced production of haemoglobin, the protein in red blood cells that carries oxygen throughout the body. It results in anaemia and can lead to severe health complications. Official figures say that there are nearly one lakh thalassaemia patients in India, with 10,000-15,000 new cases reported annually.

The country has one of the highest prevalence rates in the world, with regions such as Punjab, Gujarat and parts of the northeast showing particularly high carrier rates. "The situation is pretty bad in peripheral areas where awareness is low," says Dr Piyasi Basu Thal, a thalassaemia-major patient herself. Thalassaemia-major, the most severe form of the disorder, requires regular (two-three weeks) blood transfusions to manage symptoms and prevent complications. "It is like we are sitting on a volcano all the time," says Namitha Kumar, 46, who was diagnosed when she was four.

While the psychological burden of thalassaemia is telling, the economic cost is also significant. "Although thalassaemia is listed as a disability, there is no benefit for the patients. The government needs to bring reservation in education and employment for thalassaemia patients," demands Madan.

Kumar, who has a PhD from the National Institute of Advanced Studies in Bengaluru, agrees. “Despite paying taxes, I get no financial support from the government,” says the academic who works with Opford, a platform for rare diseases. “I can afford health insurance but there are several others who cannot.”

This story is from the {{IssueName}} edition of {{MagazineName}}.

Start your 7-day Magzter GOLD free trial to access thousands of curated premium stories, and 9,000+ magazines and newspapers.

This story is from the {{IssueName}} edition of {{MagazineName}}.

Start your 7-day Magzter GOLD free trial to access thousands of curated premium stories, and 9,000+ magazines and newspapers.

MORE STORIES FROM THE WEEK INDIAView all
William Dalrymple goes further back
THE WEEK India

William Dalrymple goes further back

Indian readers have long known William Dalrymple as the chronicler nonpareil of India in the early years of the British raj. His latest book, The Golden Road, is a striking departure, since it takes him to a period from about the third century BC to the 12th-13th centuries CE.

time-read
3 mins  |
November 17, 2024
The bleat from the street
THE WEEK India

The bleat from the street

What with all the apps delivering straight to one’s doorstep, the supermarkets, the food halls and even the occasional (super-expensive) pop-up thela (cart) offering the woke from field-to-fork option, the good old veggie-market/mandi has fallen off my regular beat.

time-read
2 mins  |
November 17, 2024
Courage and conviction
THE WEEK India

Courage and conviction

Justice A.M. Ahmadi's biography by his granddaughter brings out behind-the-scenes tension in the Supreme Court as it dealt with the Babri Masjid demolition case

time-read
2 mins  |
November 17, 2024
EPIC ENTERPRISE
THE WEEK India

EPIC ENTERPRISE

Gowri Ramnarayan's translation of Ponniyin Selvan brings a fresh perspective to her grandfather's magnum opus

time-read
4 mins  |
November 17, 2024
Upgrade your jeans
THE WEEK India

Upgrade your jeans

If you don’t live in the top four-five northern states of India, winter means little else than a pair of jeans. I live in Mumbai, where only mad people wear jeans throughout the year. High temperatures and extreme levels of humidity ensure we go to work in mulmul salwars, cotton pants, or, if you are lucky like me, wear shorts every day.

time-read
2 mins  |
November 17, 2024
Garden by the sea
THE WEEK India

Garden by the sea

When Kozhikode beach became a fertile ground for ideas with Manorama Hortus

time-read
4 mins  |
November 17, 2024
RECRUITERS SPEAK
THE WEEK India

RECRUITERS SPEAK

Industry requirements and selection criteria of management graduates

time-read
3 mins  |
November 17, 2024
MORAL COMPASS
THE WEEK India

MORAL COMPASS

The need to infuse ethics into India's MBA landscape

time-read
5 mins  |
November 17, 2024
B-SCHOOLS SHOULD UNDERSTAND THAT INDIAN ECONOMY IS GOING TO WITNESS A TREMENDOUS GROWTH
THE WEEK India

B-SCHOOLS SHOULD UNDERSTAND THAT INDIAN ECONOMY IS GOING TO WITNESS A TREMENDOUS GROWTH

INTERVIEW - Prof DEBASHIS CHATTERJEE, director, Indian Institute of Management, Kozhikode

time-read
3 mins  |
November 17, 2024
COURSE CORRECTION
THE WEEK India

COURSE CORRECTION

India's best b-schools are navigating tumultuous times. Hurdles include lower salaries offered to their graduates and students misusing AI

time-read
8 mins  |
November 17, 2024