Girl with rare genetic disorder fights against mandatory Aadhaar linkage

The 15-year-old, home-schooled girl, who has taken to the streets against the move, suffers from a rare genetic disorder of the connective tissue called Marfan Syndrome.

Published: 31st December 2017 09:17 AM  |   Last Updated: 31st December 2017 09:17 AM   |  A+A-

Eidya Pal protests against the mandatory linking of Aadhaar number with various services at ITO in New Delhi. (Express | Shekhar Yadav)

NEW DELHI: Aadhaar has many opponents and they cite different reasons--from data theft possibilities to breach of privacy concerns-—for opposing the mandatory linking of the Unique ID number to various services. But Eidya Pal has a very personal reason to oppose the government’s move to link Aadhaar cards to bank accounts, SIM cards etc.

The 15-year-old, home-schooled girl, who has taken to the streets against the move, suffers from a rare genetic disorder of the connective tissue called Marfan Syndrome.

Eidya staged a protest at ITO on Saturday asking the government to roll back its linking order. “Aadhaar as a concept is good, but the way the government is pushing it is a matter of worry. For people like me, it is very difficult to register biometrics,” she said. The teenager said she loved India and did not want to face any difficulties in doing what she wanted to due to her disorder.

Marfan Syndrome is a rare genetic disorder that affects the body’s connective tissue—the fibers that support and anchor organs and other structures in the body. It most commonly affects the heart, eyes, blood vessels and skeleton. In India, it affects 10-30 in 1,00,000 people. The most common symptom of the disorder is flexible joints. Other parts of the body which are affected include lungs, eyes and bones. Providing biometrics like fingerprints and retina scan is very difficult for people who have the disorder.
Eidya’s father Anadish Pal said, “She feels very strongly about it. Aadhaar linking must be voluntary. Also, it is not necessary to link it to financial transactions,” he added.

What is Marfan Syndrome

It is a rare genetic disorder that affects the body’s connective tissue—the fibers that support and anchor organs and other structures in the body. It most commonly affects the heart, eyes, blood vessels and skeleton.. In India, it affects 10-30 in 1,00,000 people.

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