Sisters Suffer From Rare Genetic Defect; Out Of 60 Cases Globally, 4 In Sangli
Sangli(Maharashtra,India): Twentytwo-year-old Savita doesn’t remember when she last stepped out of her house. Every time she looks in the mirror, her eyes fill with tears. “I am ashamed of myself and ashamed to face the world,’’ she says. To hide the fact that her face and body are covered with hair, she has closeted herself in a dingy house with her two sisters Savitri (11) and Manisha (13), both of whom also suffer from one of the rarest genetic disorders in the world. Only sixty such cases have been detected worldwide, and four of them are in Sangli. “I have six girls. Of them, Savita, Savitri and Manisha are afflicted. Life is hell for my girls, as they can’t go out and live a normal life,’’ says their mother Anita, whose husband Sambhaji passed away last year. Anita, the sole family breadwinner, earns Rs 50 a day by working as a farm labourer. After at- . tending the village school till Class X, Savita decided not to pursue her education. She would have had to leave the village to attend college, and her experience of the world has not been pleasant. “For my Class X exam, I went to Tasgaon as our village has no exam centre. The people’s fear of me, and their laughing, jeering and taunting depressed me so much that I coudn’t write the papers and failed. Now, I don’t want to leave the house,’’ she says. “At the village school, we had requested the teachers and parents to allow our girls to attend. But the children tease them and call them bhoot (ghosts) and monkeys,’’ says Anita. Manisha and Savitri don’t want to go to school, but their mother insists on educating them. “How can I bear the expense of treating them? I’m finding it difficult to provide them food. Today, we have only dry rice to eat,’’ says Anita. “I have made every effort. I approached local skin experts. But I need help for their treatment, if this disease can be cured at all,’’ says Anita. One of Anita’s elder daughters, Swati, is married. Her other two daughters, Laxmi and Deepali, are studying. All three of them are normal. “When Swati was getting married, we concealed the fact that we have three hairy girls. However, after the marriage, Swati’s in-laws accepted the fact and never troubled her,’’ says Anita. She hopes that her ‘hairy’ girls can be treated and get married. Local medical practitioner Amit Shah is treating Savita. “We are trying to cure her with laser treatment. This is a genetic disorder called congenital hypertrichosis lanuginosa, which will require multiple sittings. Even then, only the coarse black hair on their bodies can be removed, not the silky golden hair on their faces,’’ he says. The treatment is costly, but Shah says the hospital can afford to treat one girl on its own. However, it will need help for the treatment of the other two.
There is another case of congenital hypertrichosis lanuginosa in Sangalwadi village near Sangli. “I am not a god or goblin, I am a human being. Please don’t stare at me,’’ says Prithviraj, 11, whose face and body are covered with silver hair, four to five inches long. When a visitor comes to his house, he knows they have come to ‘see’ him and takes refuge in his mother’s arms. For some villagers, the boy is an awful spirit. For others, he is the reincarnation of Hanuman. Medical practitioner Amit Shah and his father Bharat Shah are treating the boy. “We are trying to cure him with longpulse ND YAG laser treatment,’’ says Shah. But after four sittings, hair is growing on his face again.
Source: timesofindia.com
Sangli(Maharashtra,India): Twentytwo-year-old Savita doesn’t remember when she last stepped out of her house. Every time she looks in the mirror, her eyes fill with tears. “I am ashamed of myself and ashamed to face the world,’’ she says. To hide the fact that her face and body are covered with hair, she has closeted herself in a dingy house with her two sisters Savitri (11) and Manisha (13), both of whom also suffer from one of the rarest genetic disorders in the world. Only sixty such cases have been detected worldwide, and four of them are in Sangli. “I have six girls. Of them, Savita, Savitri and Manisha are afflicted. Life is hell for my girls, as they can’t go out and live a normal life,’’ says their mother Anita, whose husband Sambhaji passed away last year. Anita, the sole family breadwinner, earns Rs 50 a day by working as a farm labourer. After at- . tending the village school till Class X, Savita decided not to pursue her education. She would have had to leave the village to attend college, and her experience of the world has not been pleasant. “For my Class X exam, I went to Tasgaon as our village has no exam centre. The people’s fear of me, and their laughing, jeering and taunting depressed me so much that I coudn’t write the papers and failed. Now, I don’t want to leave the house,’’ she says. “At the village school, we had requested the teachers and parents to allow our girls to attend. But the children tease them and call them bhoot (ghosts) and monkeys,’’ says Anita. Manisha and Savitri don’t want to go to school, but their mother insists on educating them. “How can I bear the expense of treating them? I’m finding it difficult to provide them food. Today, we have only dry rice to eat,’’ says Anita. “I have made every effort. I approached local skin experts. But I need help for their treatment, if this disease can be cured at all,’’ says Anita. One of Anita’s elder daughters, Swati, is married. Her other two daughters, Laxmi and Deepali, are studying. All three of them are normal. “When Swati was getting married, we concealed the fact that we have three hairy girls. However, after the marriage, Swati’s in-laws accepted the fact and never troubled her,’’ says Anita. She hopes that her ‘hairy’ girls can be treated and get married. Local medical practitioner Amit Shah is treating Savita. “We are trying to cure her with laser treatment. This is a genetic disorder called congenital hypertrichosis lanuginosa, which will require multiple sittings. Even then, only the coarse black hair on their bodies can be removed, not the silky golden hair on their faces,’’ he says. The treatment is costly, but Shah says the hospital can afford to treat one girl on its own. However, it will need help for the treatment of the other two.
There is another case of congenital hypertrichosis lanuginosa in Sangalwadi village near Sangli. “I am not a god or goblin, I am a human being. Please don’t stare at me,’’ says Prithviraj, 11, whose face and body are covered with silver hair, four to five inches long. When a visitor comes to his house, he knows they have come to ‘see’ him and takes refuge in his mother’s arms. For some villagers, the boy is an awful spirit. For others, he is the reincarnation of Hanuman. Medical practitioner Amit Shah and his father Bharat Shah are treating the boy. “We are trying to cure him with longpulse ND YAG laser treatment,’’ says Shah. But after four sittings, hair is growing on his face again.
0 comments:
Post a Comment