The family with no fingerprints

At least four generations of Apu Sarker's family suffer from an extremely rare condition in which they no longer have their fingerprints
Apu Sarker showed me his open palm during a video call from his home in Bangladesh. At first nothing seemed unusual, but when I looked closer I could see the smooth surfaces of his fingertips.
Apu, 22, lives with his family in a village in the northern district of Natore. He worked as a medical assistant until recently. His father and grandfather were farmers.
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The men in Apu's family seem to share a genetic mutation so rare that only a small handful of families in the world are likely to be affected: they have no fingerprints.
In Apu's grandfather's day, not having fingerprints wasn't a big deal. "I don't think he ever saw it as a problem," Apu said.
But over the decades, the tiny grooves that spin around our fingertips - actually called dermatoglyphs - have become some of the most commonly collected biometric data in the world. We use them for everything from crossing airports to voting and opening our smartphones.
A voter in India gives her fingerprint before casting a ballot
In 2008, when Apu was a boy, Bangladesh introduced national identification cards for all adults and fingerprinting was required for the database. The perplexed employees didn't know how to issue a card to Apu's father, Amal Sarker. Eventually he received a card stamped "NO FINGERPRINT".
In 2010, fingerprints became mandatory for passports and driver's licenses. After several attempts, Amal was able to obtain a passport by presenting a certificate from a medical panel. However, he never used it, partly because he feared the problems he might face at the airport. And although riding a motorcycle is essential to his agricultural work, he never received a driver's license. "I paid the fee, passed the exam, but they didn't issue a license because I couldn't provide a fingerprint," he said.
Amal has the license fee payment receipt with him, but it doesn't always help him when he is stopped - he has been fined twice. He explained his condition to his two confused officers and held up his smooth fingertips so they could see him. But none of them waived the fine.
"It's always an embarrassing experience for me," said Amal.
In 2016, the government made it mandatory to assign a fingerprint to the national database in order to purchase a SIM card for a mobile phone.
"You seemed confused when I bought a Sim. Your software froze every time I put my finger on the sensor," Apu said with an ironic smile. Apu was denied the purchase and all male members of his family now use SIM cards issued in his mother's name.
Amal Sarker's fingertips, lacking the unique patterns of most
The rare condition likely to affect the Sarker family is called Adermatoglyphia. It first became known in 2007 when Swiss dermatologist Peter Itin was contacted in her late twenties by a woman in the country who was struggling to enter the United States. Her face matched the photo on her passport, but the customs officers were unable to take fingerprints. Because she didn't have one.
Upon examination, Professor Itin found that the woman and eight members of her family had the same strange condition - flat finger pads and a reduced number of sweat glands in their hands. In collaboration with another dermatologist, Eli Sprecher, and PhD student Janna Nousbeck, Professor Itin examined the DNA of 16 family members - seven with fingerprints and nine without.
"Individual cases are very rare and no more than a few families are documented," Prof. Itin told the BBC.
In 2011, the team examined a gene, SMARCAD1, that had mutated in the nine unpressurized family members and identified it as the cause of the rare disease. At the time, practically nothing was known about the gene. The mutation appeared to have no other health effects other than effects on the hands.
The mutation they were looking for during those years affected a gene "that nobody knew about," said Professor Sprecher - hence the years it took to find it. In addition, the mutation affected a very specific part of the gene "that apparently had no function in a non-functioning gene".
Once discovered, the disease was called Adermatoglyphia, but Prof. Itin called it "Immigration Delay Disease" after his first patient struggled to get to the US, and the name stuck.
Amal and Apu Sarker. "It's not in my hands, it's something I've inherited," said Amal.
Immigration delayed disease can affect generations of a family. Apu Sarker's uncle Gopesh, who lives in Dinajpur, about 350 km from Dhaka, had to wait two years to get a passport, he said.
"I've had to go to Dhaka four or five times in the past two years to convince them that I'm really sick," said Gopesh.
When his office started using a fingerprint attendance system, Gopesh had to convince his superiors that he could use the old system - sign an attendance sheet every day.
A dermatologist in Bangladesh has diagnosed the family's condition as congenital palmoplantar keratoderma, which Prof. Itin believes may have developed into secondary vein dermatoglyphia - a version of the disease that can also cause dry skin and less sweating on the palms and feet - Symptoms reported by the Sarkers.
More testing would be needed to confirm that the family has some form of vein dermatoglyphia. Professor Sprecher said his team was "very happy" to be helping the family with genetic testing. The results of these tests may certainly bring some to the Sarkers, but no relief from the daily struggles of navigating the world without fingerprints.
Apu Sarker's younger brother Anu also inherited the rare gene mutation
For the Sarker affected, rather than evolving to accommodate their condition, society seems to become increasingly unwieldy. Amal Sarker lived most of his life without too much trouble, he said, but felt sorry for his children.
"It's not in my hands, it's something I've inherited," he said. "But the way I and my sons get into all sorts of problems is really painful to me."
Amal and Apu recently received a new national identity card issued by the Bangladeshi government after presenting a medical certificate. The card also uses other biometric data - retina scan and face recognition.
But they still can't buy a SIM card or get a driver's license, and getting a passport is a long and tedious process.
"I'm tired of explaining the situation over and over again. I've asked many people for advice, but none of them could give me a clear answer," said Apu. "Somebody suggested that I go to court. If all options fail, I may have to do it."
Apu hopes he can get a passport, he said. He would like to travel outside of Bangladesh. All he has to do is start his application.
Photos courtesy of the Sarker family.

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