Health Minister Dinesh Gundu Rao also instructed the officials to provide treatment and financial assistance to the affected children.
Health Minister Dinesh Gundurao interacting with family of Deeksha, one ofthe five children fighting rare skin condition-Xeroderma Pigmentosum.
Following South First‘s coverage of the tragic deaths of more than 15 children afflicted by a rare skin ailment named Xeroderma Pigmentosum in three villages of the Hanur taluk of the Chamarajnagar district in Karnataka, Health Minister Dinesh Gundu Rao visited the location on Friday, 22 September.
He personally visited Kuratti Hosur, Shettihalli, and Bhadrenahalli, engaging with the families of five children who are now grappling with the disease.
It may be noted that after South First’s investigative three-part series brought out the apathy these children and baffled villagers were facing, not knowing what was causing this skin condition, the Chamarajnagar district commissioner and Health Department officials took note of this and consulted the genetic counsellor from the JSS Medical College in Mysuru.
They then mapped out a detailed action plan to ensure the children were given essential medication, including sunscreen lotions and UV glasses.
The health minister carefully observed the significant impact this condition had had on the affected individuals.
He also held discussions with researchers from the JSS Medical College and GenTech who had conducted an initial investigation into this condition.
Health minister speaking to the girl Savitha and her family members at Kuratti Hosur in Chamarajnagar district.
He also discussed the situation with Health Department officials who have been regularly visiting the families to ensure the children are being monitored carefully.
Gundu Rao advised the health officials to prioritise early intervention and treatment for these children.
The minister then told reporters: “Xeroderma Pigmentosum poses a significant medical challenge. It typically starts with skin ulcers and white spots, later causing the skin to darken. Subsequently, the entire skin turns scaly, causing vision and hearing impairments in the children. Within 18 years of age, those who suffered from the disease have succumbed.”
He explained that the researchers told him that this condition occurred amongst the children of relatives who have had consanguineous marriages.
“The doctors and the research team there have been instructed to conduct comprehensive medical examinations in the region. Additionally, they have been advised to coordinate with the Health Department to provide appropriate treatment to those affected by the disease,” he said.
Meanwhile, he emphasised the need for early intervention and obtaining medical advice when getting married to relatives to prevent the disease.
Reassuring the families, he also said the Health Department would provide all necessary assistance to manage the disease effectively.
Along with treatment, the minister also assured financial assistance under the Health Department as well as under the disability scheme.
Health minister speaking to family members at Bhadrenahalli in Chamarajnagar district.
He was accompanied by MLA MR Manjunath, former MLA R Narendra, Health and Family Welfare Department Commissioner D Randeep, Chamarajanagar District Panchayat Chief Executive Officer Anand Prakash Meena, Additional District Collector Geeta Hudeda, Sub Divisional Commissioner Mahesh, District Health and Family Welfare Officer Dr Chidambara.
Speaking to South First, the families expressed gratitude for the concern and repeated follow-ups.
Basavanna, the father of ailing 13-year-old Savitha, said, “I am extremely thankful to South First for highlighting the plight of children of this village.”
He added: “The health minister has assured financial assistance to us. We hope that this gets done at the earliest. We have submitted all the necessary documents. We also expect that further research in our villages provides the health experts exact reason for the occurrence of this condition and prevent any other child from being born with this condition.”
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