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My life is not normal

•••Says 21-year-old Tawheeda Jan, born with elephantiasis

By Sola Ogundipe

Tawheeda Jan, has a big problem. The 21-year-old indigene of Jammu and Kashmir state of India has lymphatic filariasis—more commonly known as elephantiasis—one of the infamous 10 most Neglected Tropical Diseases, NTDs.

Tawheeda Jan

Spread by the bite of the Anopheles mosquito, the terrible parasitic worm infection is caused by microscopic, thread-like worms transmitted by the mosquito bites. The adult worms only live in the human lymph system. People with the disease suffer from lymphadema, elephantiasis and in men, swelling of the scrotum.

The debilitating infection has caused Tawheeda’s left leg and both feet to swell massively in size. Her feet are at least three times their normal size. Tawheeda  who told Mailonline she was born with the condition has never worn a pair of shoes because of her illness.

In an interview with Barcroft TV, she recounts her ordeal: “I was born like this. This is very serious trouble for me. My life is not normal at all.

“Initially, my condition was not affecting me much. But later the weight was too much for my body to handle.”

Tawheeda has never worn a pair of shoes because of the massive size of her legs and feet.

“From my early childhood, I never wore a pair of shoes or sandals. I was always fond of fancy shoes but wasn’t lucky enough to wear them.

“I got a pair of shoes in 2014 because I love to have them but later I had to gift them to a friend.”

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Tawheeda has undergone a few surgeries, including the removal of eight toes. However, they have all so far proved unsuccessful.

“My toes were cut off because the doctors thought it might stop the growth of my feet. Now my feet feel a bit better but it is my left leg which is giving me trouble.”

Tawheeda even had to stop attending school because her condition made it impossible to make the journey there.

She said: “We had a middle school here in the village. I used to go there until the 8th grade. But If I wanted to continue with further study I would have to go to another village. This was too far so I had to stop my studies.”

Tawheeda’s time at her school—which finished when she was 13—was also affected by bullying from some cruel pupils, she revealed.

She said: “As a kid, I was able to attend school regularly— but was targeted by bullies, who nicknamed me ‘elephant girl’ due to the girth of my leg.’

Tawheeda’s mother, Saleema, is worried about her daughter’s future as they struggle to find her treatment. It is unclear how many siblings shehas.

“She was born like this—with a big leg, unlike my other children. I feel terrible to see her struggling in doing the daily chores.”

Tawheeda ‘s family has been travelling a lot to meet doctors for possible treatment—but have so far not had any success in treating her condition.

Saleema said: “We have taken her to many doctors in various cities across Kashmir, but no-one was able to treat her illness. We then took her to Shimla Hospital and they started the treatment there. Her toes were amputated and now she feels a little better.”

Shimla is the capital of the state of Himachal Pradesh—the state south of Jammu and Kashmir.

But despite the amputation easing her discomfort, Tawheeda is still often in pain due to the condition. “This is getting worse day by day and it hurts a lot. I am not able to work and I can’t play with my friends outside. I can’t even go out of my house.

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“During the winters, I develop cracks on my feet as I can’t wear my shoes. I have to walk barefoot and it hurts a lot.”

But Tawheeda refuses to give up hope and dreams of the day she will be able to walk properly and run like normal girls.

“I am sure I will find someone who can treat this condition. I’ll wait for the day when I can run without any pain.”

Lymphatic filariasis is a very rare condition. The limbs of the affected person can swell and become much bigger than they should be. The sex organs and breasts may also swell up. The affected skin can thicken and harden to look like an elephant’s skin, hence the name elephantiasis.

To be infected, a person must be bitten by mosquitoes over a long time, in an area where the microfilaria roundworms are known to exist.

It starts when mosquitoes infected with the roundworm larvae bite and the microscopic larvae survive in the bloodstream and grow. They mature in the lymph system and can live there for years and cause a lot of damage. This is what causes the swelling.

Symptoms are often absent until the swelling occurs. Not only will those body parts begin to look bulky and lumpy with stiff, tough skin, there is also pain in the swollen area. There may also be chills, fever, and ill feeling all over.

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There are medicines to treat elephantiasis, one is called diethylcarbamazine (DEC).  Taken once a year, it kills the microscopic worms in the bloodstream. Another way to treat elephantiasis is to use DEC in combination with Ivermectin. This is also taken once a year, and the combination has shown better long-term results.

Over 120 million people are potentially at risk of Lymphatic filariasis across the world. India is the most endemic country for the disfiguring parasitic disorder followed by Nigeria.

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