Riyad
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This is scary. 
Think twice before you marry a cousin
Children endure horrifying disease as parents are relatives
Porimol Palma
Imagine a preteen girl or boy not being allowed to go outdoors to play with friends or visit relatives or even go to school.
You probably cannot imagine that or you would seriously judge the parents.
But 12-year-old Sraboni Jaman and eight-year-old Monimuzzaman have to stay indoors almost all day. The siblings know how it feels to face such realities as they suffer from Xeroderma Pigmentosum (XP), which has developed when they were below two years of age.
Dermatologists say XP is a rare genetic disorder that prevents the body's ability to repair damage caused by ultraviolet (UV) light from sunlight. It can cause severe sunburn, ulcers and skin cancer and blindness and premature death if not diagnosed early and prevented from UV.
Dermatology professor Yakub Ali of BSMMU said XP is a genetic disease that occurs mostly to the children of those who marry close cousins.
There is no study on the number of XP patients in Bangladesh. The number might be small, but they suffer immensely from huge physical, social and financial consequences, like that of Sraboni and Monimuzzaman, who mostly remain indoors to protect themselves from UV.
“I can rarely play with friends outside,” said Sraboni, a fourth-grader, who goes to school only when it is cloudy or overcast.
“I watch TV in a closed room … it always feel bad.”
Monimuzzaman too does the same. He is even lonelier as he doesn't like to watch TV.
“I play alone in the room … can't go outside because I can't keep my eyes open … they [eyes] hurt if I go out of the room,” he said.
INBREEDING
Tarequzzaman Khan of Netrakona married his cousin Latifa Akter in 2002. Both of them have the same blood group: O positive.
The couple became proud parents when perfectly healthy Sraboni was born. When the girl was 18 months' old, she would close eyes when exposed to the sunlight.
Initially, they were not concerned and would often take her out thinking that she would adjust to the sunlight, said Tarequzzaman, a small trader who lives in the capital's Uttara.
A few months later, they were worried as they noticed black spots like freckles developing on her face. They saw a dermatologist at the Dhaka Medical College Hospital. The doctor explained them about XP and asked them not to take Sraboni out in the sun.
This came as a big blow to the low-income parents.
Tarequzzaman took his daughter to a dermatologist at the Bangabandhu Sheikh Mujib Medical University (BSMMU), and saw some doctors in Dhaka as well as in Kolkata and Chennai of India in the next few years.
All of them gave him the same piece of advice -- protect Sraboni from UV.
“We try to do that, but what would happen to her when she would visit our village home? Sraboni would run and play with other kids. How would we stop her?” he said.
Eventually, the disease had spread to her entire body with the eyes being affected the most.
The couple had their second child -- a healthy boy -- when Sraboni was four years' old. But alas! They discovered similar spots on Monimuzzaman's face when he was 18 months' old. They rushed him to doctors who confirmed that it too was a case of XP.
Sraboni had undergone eye surgeries thrice, as cataract developed in her eyes. Doctors said there were indications of cancer in the cataract, the parents said.
SCHOOLING?
After being denied access to mainstream schools, Sraboni was enrolled in a madrasa in Uttara. She went to the madrasa, covering her whole body. But that too did not last long.
Her parents stopped sending her to the madrasa in 2014, as it was far away. The girl could just complete class-III.
Last year, they tried to get her enrolled in a school close to their rented house, but the school did not accept her. After repeated requests, Sraboni was admitted this year on condition that she could only sit for the exams and would not attend classes regularly.
Monimuzzman faced troubles too.
“Relatives ask him what class was he in. He cannot answer. Last year, he became desperate. Then I took him to the school Sraboni goes to and got him admitted in play group,” Tarequzzaman said.
Now tutors come home to help Sraboni and Monimuzzman in their studies.
“We are very concerned about our kids' physical, psychological and social future,” said the worried father.
Tarequzzaman said the family's financial condition worsened as they had to sell their properties and use whatever savings they had for medical purposes.
As per doctors' advice, they need a house which is totally protected from ultraviolet ray.
“Arranging all this is almost impossible for us,” he told this correspondent recently.
Doctor Yakub Ali advised not to have marriage between close cousins. If there is no alternative, he said, the couple should get genetic tests done before having children.
Early diagnosis and protection from sunlight can prevent the patients from complications, he added.
http://www.thedailystar.net/backpage/think-twice-you-marry-cousin-1315915
Think twice before you marry a cousin
Children endure horrifying disease as parents are relatives
Porimol Palma
Imagine a preteen girl or boy not being allowed to go outdoors to play with friends or visit relatives or even go to school.
You probably cannot imagine that or you would seriously judge the parents.
But 12-year-old Sraboni Jaman and eight-year-old Monimuzzaman have to stay indoors almost all day. The siblings know how it feels to face such realities as they suffer from Xeroderma Pigmentosum (XP), which has developed when they were below two years of age.
Dermatologists say XP is a rare genetic disorder that prevents the body's ability to repair damage caused by ultraviolet (UV) light from sunlight. It can cause severe sunburn, ulcers and skin cancer and blindness and premature death if not diagnosed early and prevented from UV.
Dermatology professor Yakub Ali of BSMMU said XP is a genetic disease that occurs mostly to the children of those who marry close cousins.
There is no study on the number of XP patients in Bangladesh. The number might be small, but they suffer immensely from huge physical, social and financial consequences, like that of Sraboni and Monimuzzaman, who mostly remain indoors to protect themselves from UV.
“I can rarely play with friends outside,” said Sraboni, a fourth-grader, who goes to school only when it is cloudy or overcast.
“I watch TV in a closed room … it always feel bad.”
Monimuzzaman too does the same. He is even lonelier as he doesn't like to watch TV.
“I play alone in the room … can't go outside because I can't keep my eyes open … they [eyes] hurt if I go out of the room,” he said.
INBREEDING
Tarequzzaman Khan of Netrakona married his cousin Latifa Akter in 2002. Both of them have the same blood group: O positive.
The couple became proud parents when perfectly healthy Sraboni was born. When the girl was 18 months' old, she would close eyes when exposed to the sunlight.
Initially, they were not concerned and would often take her out thinking that she would adjust to the sunlight, said Tarequzzaman, a small trader who lives in the capital's Uttara.
A few months later, they were worried as they noticed black spots like freckles developing on her face. They saw a dermatologist at the Dhaka Medical College Hospital. The doctor explained them about XP and asked them not to take Sraboni out in the sun.
This came as a big blow to the low-income parents.
Tarequzzaman took his daughter to a dermatologist at the Bangabandhu Sheikh Mujib Medical University (BSMMU), and saw some doctors in Dhaka as well as in Kolkata and Chennai of India in the next few years.
All of them gave him the same piece of advice -- protect Sraboni from UV.
“We try to do that, but what would happen to her when she would visit our village home? Sraboni would run and play with other kids. How would we stop her?” he said.
Eventually, the disease had spread to her entire body with the eyes being affected the most.
The couple had their second child -- a healthy boy -- when Sraboni was four years' old. But alas! They discovered similar spots on Monimuzzaman's face when he was 18 months' old. They rushed him to doctors who confirmed that it too was a case of XP.
Sraboni had undergone eye surgeries thrice, as cataract developed in her eyes. Doctors said there were indications of cancer in the cataract, the parents said.
SCHOOLING?
After being denied access to mainstream schools, Sraboni was enrolled in a madrasa in Uttara. She went to the madrasa, covering her whole body. But that too did not last long.
Her parents stopped sending her to the madrasa in 2014, as it was far away. The girl could just complete class-III.
Last year, they tried to get her enrolled in a school close to their rented house, but the school did not accept her. After repeated requests, Sraboni was admitted this year on condition that she could only sit for the exams and would not attend classes regularly.
Monimuzzman faced troubles too.
“Relatives ask him what class was he in. He cannot answer. Last year, he became desperate. Then I took him to the school Sraboni goes to and got him admitted in play group,” Tarequzzaman said.
Now tutors come home to help Sraboni and Monimuzzman in their studies.
“We are very concerned about our kids' physical, psychological and social future,” said the worried father.
Tarequzzaman said the family's financial condition worsened as they had to sell their properties and use whatever savings they had for medical purposes.
As per doctors' advice, they need a house which is totally protected from ultraviolet ray.
“Arranging all this is almost impossible for us,” he told this correspondent recently.
Doctor Yakub Ali advised not to have marriage between close cousins. If there is no alternative, he said, the couple should get genetic tests done before having children.
Early diagnosis and protection from sunlight can prevent the patients from complications, he added.
http://www.thedailystar.net/backpage/think-twice-you-marry-cousin-1315915
