The two activists from Karnataka, have been creating awareness and working for policy change, to benefit those with haemophilia and thalassemia.
Two people from Karnataka, who have been separately spearheading efforts to highlight blood disorders and those suffering with social stigmas and struggling with financial burdens, were honoured with Shresth Divyangjan, a national award for empowerment of persons with disabilities.
On Tuesday, December 3, 2024, Suresh Hanagavadi, founder of the Karnataka Haemophilia Society, and G. Manjudarshini, a sub-registrar posted at Srirangapatna, were presented the national awards. Their efforts have not only created awareness with regard to the “hidden disability in the blood”, but they have also successfully lobbied with governments to bring about policy changes.
While Dr. Hanagavadi, a haemophilia patient, is credited with having created awareness about the disorder in society over three decades besides facilitating policy changes, Ms. Manjudarshini, who has thalassaemia, has worked with the Thalassaemia and Sickle Cell Society and blood banks highlighting the importance of preventing the disorder.
Dependence on transfusion
“Thalassaemia patients depend on others for blood transfusion that happens once in 15 or 21 days. Bone marrow transplant is very expensive. People lose hope or feel depressed due to such conditions. I work with children, motivating them, and also spread awareness about the need for screening to prevent child birth with blood disorders,” said Ms. Manjudarshini, who requires blood transfusion once in 21 days.
The 33-year old government official, who volunteers with Rashtrotthana Blood Centre and Samraksha, lost her sister to thalassaemia, over two decades back. The incident spurred her into social service. “I have had more than 500 transfusions till now but many of my friends do not know about my condition. I have also not sought any special preferences,” she said.
Dr. Hanagavadi, currently a professor of Pathology at JJM Medical College, Davangere, and president of the society, which he co-founded in 1991, was spurred into becoming a medical practitioner after the death of his uncle from haemophilia, and Ms. Manjudarshini decided to volunteer for the cause of thalassaemia after her sister died owing to the disorder.
“Thirty years ago the government was not involved in the management of haemophilia. We used to raise funds to buy medicines to be distributed among the needy as a large number of patients are poor,” recalled Dr. Hanagavadi, who had a highly sheltered childhood to prevent any injuries that could turn fatal.
SPB’s role
He also credited the late singer S.P. Balasubrahmanyam for helping raise funds. “Today, the society has established a well-equipped laboratory for blood diseases and other facilities needed at Davangere to serve those requiring treatment. Barring subsidised cost for laboratory services, every other facility including blood component is free,” said Dr. Hanagavadi.
By 2000, the society had been advocating for free medicines to be distributed through district hospitals, which the government implemented, he said, adding that awareness had also been created among government doctors to handle haemophilia patients.
The 61-year-old hopes to convert the Davangere facility into an institute that would treat all kinds of blood disorders to work on the focused way. “Disability in haemophilia is preventable. We look healthy from the outside, but our disability is in the blood. We have lot of challenges,” said the doctor.
source/content: thehindu.com (headline edited)