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Lack of experts and drugs turn rare ailments fatal

Four-year-old Kusuma of Subramanyapura is confined to the wheelchair, her body reduced to nothing more than an eggshell. When she was one, she developed Fibro Ossificans Progressiva (FOP), a genetic fault wherein her muscles were replaced by bones, rendering her immobile and helpless.

Similarly, Dhanya Ravi, 25, of Jeevan Bima Nagar is completely dependent on the wheelchair since she never grew up physically due to deformed bones. She suffers from Osteogenesis Imperfecta, a condition due to which her bones have become brittle, breaking and repairing themselves. “She cannot ever hug her mother as that too might shatter her bones,” says Dr Meenakshi Bhatt, who treats her.

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