Despite the many advances in science, there are still diseases, genetic disorders, and mutations that puzzle scientists. Add to that the fact that not every country can boast of having the latest technology, equipment, and specialized doctors to treat patients. Some countries lack basic access to a doctor and for many that is a luxury that cannot be afforded. Consequently, the person lives with whatever the illness they are afflicted with, painful or not. Depending on the severity of their conditions, some folks are forced to live their lives shunned from their local community. Ridiculing, taunting, fear of physical appearances, as well as concern of it being contagious are just some of the stigma these people have to live with.It is a genetic disorder where tumours grow in the nervous system, appearing on the surface of the body.
The man from Shajadpur, Bangladesh, had his first tumour appear on his forehead when he was 13 years old.
There is no cure for this genetic disorder but surgery can be done to remove the tumours. For those that have cancerous tumours, radiation and chemotherapy is used.
NF1 is present at birth but the tumours begin to appear more commonly around the age of 10. NF2 appears in adulthood, with the second reducing life expectancy anywhere from 10 to 15 years.
He risks losing his eyesight. His situation is so extreme, he cannot wear clothes as it causes too much discomfort for the man. “I also suffer a lot with itching on the body and the neck. My body feels heavy,” he says.
“Nowadays Abdullah doesn’t talk to me. I understand why he feels like that. I can’t do anything for my son or family,” Shadot says.
“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,” Shadot reveals. “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.”
The 47-year-old says he use to be a labourer but now he can’t work as he can’t do simple tasks.
His wife, Tajmohel Khatun, helps him with everything from changing his clothes to taking him to the bathroom.
She says the future looks grim for the family.
His condition got progressively worse over time. “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,” Tajmohel says.
The tumours have grown over the eyes, blocking the man’s vision.
“I haven’t seen any case like this before. Patient Shadat’s condition is very serious,” Hassan admits.
Mohammed Mamun Biswas is a social worker who has been working diligently, trying to raise funds and bring the government’s attention to help Shadot.
The National Institute of Neuro-Sciences & Hospital in the city of Dhaka will be looking at Shadot’s case.
With the National Institute of Neuro-Sciences & Hospital taking a look at her husband’s situation, gives hope to Tajmohel.
“I pray to God to cure my husband so I don’t have to live the rest of my life as a widow,” she says.
It is estimate neurofibromatosis affects 1 in 3,000 births. Some cases are more severe than others.
While those with various tumours complain from pain, numbness and weakness in the fingers and toes.
Because Shadot’s situation is so extreme, it is difficult to determine if all the tumours will be removed or just the bigger ones, in addition to the ones covering his eyes.
->**Watch Shadot explain his condition and what his life is like.**<-