Jaipur: It was celebration time for 23-year-old Faiza Bano, a resident of the Walled City in Jaipur on September 9 this year when she got married. It was a difficult decision for her family and her in-laws to solemnise the wedding. But finally she got married and her in-laws accepted her with happiness despite knowing that the disease which she is suffering from is rare.
She has been fighting the disease since childhood with a 'never give up' spirit. The disease which she was diagnosed with is lysosomal storage disorder (LSD). In the entire state, only 26 children have been identified who have tested positive for the rare LSD.
Also, there are only 12 identified patients diagnosed with Gaucher (one of LSD) disease in the state, Bano is one of them. She is the only girl diagnosed with Gaucher who is married now.
When she came to participate in a programme on International Gaucher Day organised at a government-run JK Lon Hospital by Lysosomal Storage Disorders Support Society (LSDSS) on Monday, she seemed full of life with a smile on her face.
Despite being diagnosed with the rare disorder, she never quit studies. "I am doing MA in Urdu. My husband is also a student. We got married on September 9 this year and are leading a happy life," said Bano.
She recalled the miseries she faced since childhood being a Gaucher patient. "When I was just one-year-old, my parents noticed that I was not keeping well. The doctors discovered that I have spine enlargement, drop in platelet count and also other related complications. They were not able to diagnose the disease. But, when my parents took me to AIIMS, Delhi, doctors conducted some tests. There I tested positive for Gaucher," said Bano.
Bano was fortunate enough that she found an international company that helped her in getting the treatment for the disease, which turned around her life completely. "The treatment is available in India but it is expensive. It is not difficult but next to impossible for families to afford it. It is enzyme replacement therapy (ERT), which is given to me every 15 days at AIIMS, Delhi," said Bano.
JK Lon Hospital superintendent Dr Ashok Gupta said, "In our state, there are 26 identified children with LSD. Only six of them are getting ERT, with the support of social organisations or with private companies under CSR activities.
But, 20 such children are not getting any such help and they are living without any treatment.
The JK Lon Hospital had sent a proposal to the state government in which they sought financial support from the state government. For treatment of these 26 children, Rs12 crore is required every year.
Manjit Singh, president, LSDSS said, "Gaucher can be a life-threatening condition if not treated timely. There are around 26 children in Rajasthan who have been diagnosed with Gaucher and LSD. It is only the government and the state health minister who can consider to create a corpus fund from the annual state health budget for better diagnosis and treatment of rare disease patients so that other children would also get treatment like Bano."
She has been fighting the disease since childhood with a 'never give up' spirit. The disease which she was diagnosed with is lysosomal storage disorder (LSD). In the entire state, only 26 children have been identified who have tested positive for the rare LSD.
Also, there are only 12 identified patients diagnosed with Gaucher (one of LSD) disease in the state, Bano is one of them. She is the only girl diagnosed with Gaucher who is married now.
When she came to participate in a programme on International Gaucher Day organised at a government-run JK Lon Hospital by Lysosomal Storage Disorders Support Society (LSDSS) on Monday, she seemed full of life with a smile on her face.
Despite being diagnosed with the rare disorder, she never quit studies. "I am doing MA in Urdu. My husband is also a student. We got married on September 9 this year and are leading a happy life," said Bano.
She recalled the miseries she faced since childhood being a Gaucher patient. "When I was just one-year-old, my parents noticed that I was not keeping well. The doctors discovered that I have spine enlargement, drop in platelet count and also other related complications. They were not able to diagnose the disease. But, when my parents took me to AIIMS, Delhi, doctors conducted some tests. There I tested positive for Gaucher," said Bano.
Bano was fortunate enough that she found an international company that helped her in getting the treatment for the disease, which turned around her life completely. "The treatment is available in India but it is expensive. It is not difficult but next to impossible for families to afford it. It is enzyme replacement therapy (ERT), which is given to me every 15 days at AIIMS, Delhi," said Bano.
JK Lon Hospital superintendent Dr Ashok Gupta said, "In our state, there are 26 identified children with LSD. Only six of them are getting ERT, with the support of social organisations or with private companies under CSR activities.
But, 20 such children are not getting any such help and they are living without any treatment.
The JK Lon Hospital had sent a proposal to the state government in which they sought financial support from the state government. For treatment of these 26 children, Rs12 crore is required every year.
Manjit Singh, president, LSDSS said, "Gaucher can be a life-threatening condition if not treated timely. There are around 26 children in Rajasthan who have been diagnosed with Gaucher and LSD. It is only the government and the state health minister who can consider to create a corpus fund from the annual state health budget for better diagnosis and treatment of rare disease patients so that other children would also get treatment like Bano."
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