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The Financial Express

Six members of a family suffering from neurofibromatosis

| Updated: November 12, 2017 14:05:29


The six members of a family in Kismat Ghoragasa village of Jhenidah have been suffering from neurofibromatosis. The photo was taken on Wednesday. 	— FE Photo The six members of a family in Kismat Ghoragasa village of Jhenidah have been suffering from neurofibromatosis. The photo was taken on Wednesday. — FE Photo

JHENIDAH, Oct 25: Six members of an impoverished family in a village under the district are suffering from incurable neurofibromatosis (causing various pimple-shaped tumors to form literally everywhere, also known as neurofibromas), facing awkward situations while in public gatherings.

 Rural physician Izal Uddin of Kismat Ghoragasa village under Harinakundu upazila of the district was a patient of neurofibromatosis.

 Izal Uddin's issues Ifaz Uddin (38), Nargis Khatun (47) and Parivna Khatun (24) have inherited the disease from their father.

 After the second generation, the members of the third generation did not get respite from the incurable disease as well, making them vulnerable to the closure of their academic life now.

 Ifaz uddin's son Anik (15), Nargis's son Romeo (16) and Parvina's daughter Chhoya Khatun (7), carrying the disease, are to experience strange behaviour from their classmates in schools. Others show disinterest to sit beside the affected children, though the disease is completely non-communicable.

 Moreover, the hereditary disease put them in trouble while taking part in games and sports with other boys and girls.

  Nargis khatun has been forsaken by her husband because of the disease. She is now living along with her son raising a hut beside her brother Ifaz's tiny house at the village. They have nothing more than their dwelling house on 2.5 decimals of land. There they live an inhuman life in a congested atmosphere.

 According to Dr. Atiar Rahman working in a government hospital, there is no cure for neurofibromatosis. This disease does not bear risk of death too.

 What the patients can do is keeping the severity of the disease under control, consulting doctors time to time, Dr. Atiar added.

Due to financial constraints, deprived of treatment, the whole family has turned to be utterly helpless.

Md. Kurban Ali, a public representative of Kismat Ghoragasa village told this correspondent that Ifaz, Nargis and others affected with the hereditary disease live from hand to mouth. They feel embarrassed in society because of their disease.  

 The affluent section of people of society should come forward extending their helping hands easing the suffering of the hereditarily affected neurofibromatosis patients here in Jhenidah, Kurban Ali added. 

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