A DAD suffering a rare genetic condition that’s left him covered in “bubble-like” tumours is facing a race against time to have them removed.
Shadot Hossain is thought to suffer from neurofibromatosis, causing tumours to grow along his nerves.
Without an operation to slice away the growths, that cover his body from head to toe, the 47-year-old could permanently lose his eye sight.
The tumours are so severe Shadot can’t wear clothes on his top half, and struggles to feed himself.
The father-of-three who lives in Shajadpur, North Bangladesh, said: “It is very difficult to live with pain like this.
“I also suffer a lot with itching on the body and the neck. My body feels heavy.”
The discomfort Shadot lives with on a daily basis makes eating certain foods difficult because they require more chewing.
He said: ““If I eat chapattis, my neck hurts so I eat rice.”
And his extreme appearance means even Shadot’s own 12-year-old-son Abdullah Hossain shies away from looking at his father.
The stares and comments from passers-by hurt Shadot as much as the physical pain he endures.
The kids when they see me they just freak out and start running. They’re afraid of me
Shadot Hossain
Shadot said: “The moment anyone sees me they try to move away from me.
“The kids when they see me they just freak out and start running. They’re afraid of me.
“I cannot go outside because children are afraid of me.
“They call me ‘Monster.’ I wasn’t always in this condition. I was handsome in my young age.
“Nowadays Abdullah doesn’t talk to me. I understand why he feels like that.
“I can’t do anything for my son or family.
“I feel very bad, at night I don’t sleep because I feel afraid.”
Shadot used to work as a labourer but as his condition worsened he failed to do simple everyday tasks and had to quit his job. Without a regular income he cannot afford medicine or further treatment.
He said: ”I don’t work anymore and I don’t take any kind of medicine.”
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Shadot’s wife Tajmohel Khatun, 39, has seen first hand the impact her husband’s deteriorating condition – and lack of finances – has had on the family.
Tajmohel said: “He is not able to do anything alone now.
“We even need to help change his clothes and help with using the toilet.
“Villagers provide us with clothes to wear as I am not able to earn a living.
“My husband is ill and I have to accept this fact.
“I have gotten my two daughters married but because of our financial crisis I cannot send my son to school.”
Tajmohel met Shadot when she was 19 years old and Shadot was 27.
Although Shadot had already started developing tumours on his body he was still able to lead a normal life.
Giving birth to the couple’s first child, a daughter, five years later, the couple went on to have another girl.
Both daughters have since married and left the family home.
Tajmohel said: “When I married Shadot he was suffering with this disease but he was fine but his condition is so much worse now; slowly the tumours have grown.”
Shadot first noticed a tumour growing on his forehead when he was just 13-years-old but it’s only in the last five years that his condition has become so acute.
He said: “In the last five years the tumours covered my whole body; my eyes have been closed by them and I can’t see properly.”
Without medical intervention, doctors say Shadot is at risk of permanently going blind. Dr Mahmudul Hassan says he has never seen a patient with such extreme tumours.
He said: “I haven’t seen any case like this before. Patient Shadat’s condition is very serious. We need to cut the layers from his eyes for the lack of visibility that he is suffering. If not cured he can lose his visibility.”
Without the money to fund the treatment themselves the family are relying on charity instead. Local social worker Mohammed Mamun Biswas has been campaigning and collecting money on Shodat’s behalf.
He said: “I ask the government to provide proper treatment to Shadot so he can get back to a normal life and support his family and help his boy to study.”
And thanks to Mohammed’s efforts Shadot will go to the National Institute of Neuro-Sciences & Hospital in Dhaka for a full diagnosis and potential treatment.
Tajmohel said: “I pray to God to cure my husband so I don’t have to live the rest of my life as a widow.
“There is no peace in our lives.”
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