Mother-daughter battle rare disease, seek Odisha government's help
KENDRAPARA: The irony couldn’t be starker. Even as Chief Minister Naveen Patnaik is on a Biju Swasthya Kalyan Yojana (BSKY) smart health cards distribution spree in districts, people in rural and inaccessible pockets of the State continue to be deprived of healthcare benefits due to lack of awareness about the government schemes.
For 55-year-old Pitei Nayak and her 23-year-old daughter Sulochana in remote Basudeiput village under Garadpur block, life came to a standstill after doctors diagnosed the mother-daughter duo with Neurofibromatosis many years back. A rare genetic disorder, Neurofibromatoses are a group of genetic disorders that cause tumors to form on nerve tissues. These tumors can develop anywhere in the nervous system, including the brain, spinal cord and nerves and require specialised treatment.
While Sulochana was diagnosed with the medical condition at birth, Pitei’s diagnosis happened in 1999. Sources said, Pitei along with Sulochana visited Cuttack’s SCB Medical College and Hospital many times but after her husband’s death in 2011, things started getting worse as economic hardship struck.
While she was told by doctors that her condition had advanced and nothing much could be done, Pitei still left no stone unturned and sold their only patch of 1.5 acre land for `3.5 lakh just to ensure her daughter’s treatment. She was hopeful as doctors had said Sulochana’s condition was treatable. But life came crashing down on her when they referred Sulochana to Tata Memorial Hospital in Mumbai.
Srikant Nayak, a relative, said the family has exhausted all savings and going to Mumbai for treatment is not possible. The only hope is help from the government, he said. Surprisingly, the family is not enrolled under BSKY, the government’s flagship universal heath coverage scheme despite being eligible. The family’s ignorance about the scheme raises many questions about the reach of such programmes in rural areas. ADMO M Beg said he was unaware of the case as the mother-daughter duo did not seek treatment here.