When the coronavirus pandemic swept India this year, its ferocity killed tens of thousands of people. But thousands of survivors soon returned to hospitals with an ominous fungal infection called mucocele.
Complaints ranged from blurred vision to drooping eyelids or nasal discharge. At high risk are people with diabetes or those with severely weakened immune systems. In many cases, the only treatment is to remove the fungus from the affected area – most often that area is the eye.
“It’s a flesh-eating fungus that destroys tissues as they grow,” said Akshay Nair, an eye plastic surgeon who treats mucosal disease patients in Mumbai. Before the pandemic, Nair was seeing 10 of those patients in one year, but since January, he has treated nearly 100 infected patients. “If it involves the sinuses, they must be cleansed. If it involves the eye – the eyeball, the eyelid and the muscles around the eye must be removed, leaving behind the bare bony cavity.”
There is a shortage of the antifungal drug used in the treatment, amphotericin B, in India. Expensive medication must be given for at least three to five weeks after surgery, which increases costs and complicates treatment efforts.
Doctors believe that one reason for the wave of cases in India is the rampant use of steroids to treat Covid-19 patients. Steroids improve outcomes in severe coronavirus patients, but they also make them susceptible to these infections by raising blood sugar levels.
Photographer Ronnie Sen spent a week in Maharashtra in June with patients who made the difficult decision to have one eye removed to survive the deadly disease. The large state in western India has seen nearly 8,000 cases of infection, and nearly 700 infected patients have died. These are some of their stories.
A devoted mother and affectionate wife, 49-year-old Khurshida Bano has dedicated her life to taking care of her family’s needs. With her sons and daughter now married, she was looking forward to some rest and play time with her grandchildren. This year otherwise.
In February, Banu contracted covid-19 and suffered severe lung damage. Two weeks after she returned from the hospital, not one of her eyes was opened. “It looked like she didn’t exist,” her son Elias said. The family was shocked when the doctor told them they needed to have the eye removed.
Her son recounted the doctor’s advice: “Either watch her, or she may not live.” Bano, who has diabetes, spent 40 days in a public hospital where she received free treatment for black fungus. As she neared her hospital discharge date, she had another setback: a stroke that left her right hand and leg paralyzed.
She’s now home, but her days are punctuated by physiotherapy sessions and weekly hospital visits to change the bandage on her eye.
She said, “God’s kindness to save one of my eyes.” “I’m glad I’m back with my family.”
Anil Baburao Wankidi
As a photographer, Anil Baburao Wankedi relied on two tools: a Nikon camera and his sight. He photographed dreamy weddings and adoring couples in engagement ceremonies. He was his family’s breadwinner, and his work helped pay for his son’s college and his daughter’s school.
In April, he recovered from COVID-19 after being briefly hospitalized. But within days, he had to be readmitted. His right eye was severely swollen.
By June, Wankedi was still in the hospital, his face surrounded by a bunch of tubes. His right eye was removed. He almost lost his life when several members started to fail.
Wankhede said he feels lost. His brother had to borrow thousands of dollars to fund his treatment. The 56-year-old does not know if he will be able to return to his job.
“I don’t know how I’m going to act now,” he said. “You have ruined my life. There is only darkness.”
Time is running out for Surekha Khadesh and her family.
In April, two weeks after she contracted covid-19, Khadesh’s right eye started to water. Then came the bloating and shot pain. An MRI scan revealed that her pockets were filled with black fungus. The family was shaken. A relative recently lost his life to the same fungal infection before he could receive treatment.
Doctors said she needed immediate surgery because the infection would reach her brain soon. But they were unable to work until a negative coronavirus test result came back.
Khadesh, 49, spent more than a month in the hospital, and a $12,000 bill meant the family lost a lot of their savings. As the family struggled to get the amphotericin injections they needed after being hospitalized, it appeared that the infection had reached her second eye. Her left eyelid droops and barely opens.
She needs urgent treatment to save the other eye. She said Covid was “nothing” compared to onychomycosis. “I don’t feel like living any longer,” she said.
Baburao Campbell, 45, sells tea at construction sites in Pune. His earnings were erratic. In the good months, he can make close to $300. During lean periods, he wouldn’t even earn $100.
But his income dried up when the shutdown happened last year. Then he contracted covid-19 in February.
A week after he fell ill, his blood sugar level had risen. After that, the vision in his right eye began to fade.
His doctor told him it was a black fungus. The only medicine that could save him was in short supply and costing more than his monthly income. Every day for a month, he needs six injections of amphotericin. The bills rose to $15,000.
Campbell prematurely withdrew funds from a long-term account. His wife sold her gold jewelry. He borrowed his cousin on his behalf. The family moved to a relative’s house to save on daily expenses.
“How am I going to manage this huge financial burden now?” question.
For years, Somnath Bodak has taught hundreds of schoolchildren in Marathi, a local language, in Maharashtra. Then the pandemic closed schools, and in April, Budke tested positive for Covid.
Signs of black fungus began 10 days after his discharge from the hospital: his jaw began to hurt, and then his eye swollen. Finally, his eyelid began to droop. Computerized tomography revealed infection.
Three hospitals in Nashik told him they did not have amphotericin in stock, the antifungal medicine he needed. At the main government hospital, they suggested going to Mumbai for treatment.
Since mid-May, Boudki and his brother have been living in a large general hospital in Sion, Mumbai, where his left eye has been removed. His headache has diminished since the operation, but his spirits are low.
“Life became bleak. I weep silently for myself,” he said. His suffering is compounded by his separation from his little daughter, who calls him every day asking when he will be back. At least another month will pass before he is released.
“Papa, we love you. His daughter said to him one afternoon recently.
Chitra Arun Rakshi
In March, Chitra Arun Rakshi, a 47-year-old housewife in Pune, lost her father to a heart attack. Rakesh and her husband spent 10 days at her parents’ home performing the rituals when relatives arrived to pay their respects. Some of them brought the virus.
When the Rakshes returned, they tested positive for coronavirus. For 10 days in April, they were hospitalized. Her four children celebrated their parents’ return home. But the joy did not last long.
The irritation in her right eye worsened, and she cried in pain. Soon, her eyelids closed completely. She said that when it was forcibly opened, she couldn’t see anything.
She begged the doctor to save her eye, but removing it was the only option. Now, her daughter Kajal, 25, changes her bandages daily. All that’s left there is “skin” and an “empty pit,” Kajal said.
Rakshe’s doctor said she may be able to get an artificial eye after two months. Right now, she is shocked. “Even enemies should not be cursed with this disease,” she said.