My maternal uncle Neelakanthappa’s (45) demise due to haemophilia in 1980 left an indelible mark on my life. The miserable moments he had to suffer minutes before he breathed his last changed the very direction of my life,” recalls Dr Suresh Hanagavadi, the former president of Haemophilia Federation of India (HFI) while he recalls the seed of Karnataka Haemophilia Society (KHS), Davanagere, that has grown to be a gigantic tree today.
He recalls:“His pain was unbearable. He started plucking hair on his head as he suffered a brain haemorrhage. He told me, ‘Come what may become a doctor. Find a solution to this disease.’ As I promised, he stopped breathing. That very moment I vowed to be a doctor and work for the cause of haemophilia patients.”
In a way, Neelakanthappa’s death sowed the seed for the first exclusive centre in Karnataka to treat rare bleeding disorders. Hanagavadi, himself a haemophilia patient, completed MD (Pathology), and founded KHS. What was just started as a self-help group with only nine patients, the KHS, today is a leading institute of Karnataka in the identification, diagnosis, treatment and rehabilitation of patients with Haemophilia, a congenital bleeding disorder caused by the deficiency of certain clotting proteins in the blood. This medical condition requires immediate and proper treatment or else the patients may die due to excess bleeding. The KHS, affiliated to HFI, New Delhi, has been ensuring the availability of required factors freely or at subsidised rates.
The initial days were challenging for Dr Hanagavadi, his wife Meera, the women’s group president of KHS, and a group of students who supported the cause. To create awareness, garner support and raise funds, they decided to host music concerts.
“When we approached S P Balasubrahmanyam in 1999, he was moved to hear the stories of haemophiliac patients. He asked us to arrange his concert if his songs healed patients. He even became the society’s chief patron,” Dr Hanagavadi says.
The KHS has created an exclusive infrastructure in North and Central Karnataka to treat rare bleeding disorders such as haemophilia, Thalassemia and Von Willebrand disease. It conducted a training for doctors in the treatment and management of haemophilia for the first time in the country with the help of a team of doctors from Christian Medical College & Hospital, Vellore, in Bengaluru in 2003. The society has been in the forefront in the identification, diagnose, treatment, resource mobilisation, training of paramedical professional and conducting rehabilitation camps for family members,” Dr Hanagavadi adds.
The KHS, a 15-bed inpatient facility, has a day-care transfusion ward, blood component separation unit, physiotherapy, rehabilitation, psycho-social counselling sections, besides a library for patients and medical doctors and a training hall. In the past three decades, about 1,500 patients have been benefited. It has about 700 registered patients with haemophilia and other bleeding disorders, including 80% men and 15% women. The KHS gets about four registered patients for treatment daily and about three new patients a month.
Need for awareness
There could be around 7,000 haemophilia patients across Karnataka. But only about 700 have been identified so far. A large number of haemophilia cases have remained undiagnosed due to expensive treatment, lack of awareness and distance in reaching hospitals. Till about five years ago, required factors weren’t available at a government hospital. The society’s consistent advocacy for free factors has ensured the availability at district hospitals.
“Approximately, a haemophilia patient needs Rs 2 lakh annually for treatment. And a minimum of Rs 10,000 is needed to manage one bleeding episode. Rehabilitation programme, which includes physiotherapy and psycho-social counselling for patients and training and counselling for their family members, is required to restore normalcy.
Patients mainly come here from all over Karnataka, Telangana, Andra Pradesh and Tamil Nadu seeking treatment. “We plan to add a mobile service unit,” Dr Hanagavadi says.
“I’ve been leading a normal life now. After my graduation, I was given a job at the KHS itself,” 23-year-old MBA graduate Naveen Havali, who is a haemophilia patient, says. The tale Siddesh, from Kottur, is equally moving. “I was disabled when I came here four years ago. My mother couldn’t afford treatment. Life has changed for us now,” he says. There are many such instances transformed lives at KHS.
One can contact Suresh Hanagavadi on 8722209404