The purpose of her life came in the form of her husbands Haemophilic disorder, says Dr Veena Bharathi after meeting Ranjana Ramachander who is doing all she can to spread awareness about the deadly disease
“Instead of me searching for a purpose in life , ‘the purpose’ itself came to me in the form of my husband’s Haemophilic disorder!” Says Ranjana Ramachander, Secretary of Bangalore Chapter of the Haemophilia Society.
Her life sketch truly reflect her words. Ranjana, a graduate of ‘J J School of Arts’, Mumbai, married Ramachander in 1979, knowing fully well that her husband was Haemophilic. Ranjana stoically narrates her husband’s childhood trauma. “As a ten-year-old boy, when Ramachander started getting blue patches and bruises on his body, his parents thought that his condition was due to some nutritional deficiency. But the doctors diagnosed Ramachander as a PWH (Person With Haemophilia), who was suffering from a bleeding disorder called ‘the classical Haemophilia’ due to the deficiency of the clotting factor VIII in his blood.”
Ranjana met Ramachander at a wedding when she was barely 19 years and he was 26 years of age. “Once we both discussed about Ramachander’s Haemophilic condition, I underwent relevant blood tests to make sure that I was not a carrier of the Haemophilic gene, so that the chances of our offspring becoming Haemophilic would be remote,” Says Ranjana. When Ranjana settled down with her husband in Bangalore, Ramachander was working for a multinational company. “Ram never looked like a Haemophilic sufferer, though he needed the timely infusions of the deficient clotting factor to prevent the bleeding episodes. We used to tour a lot and had the best time of our life for nearly a decade after our marriage”, recalls Ranjana. But, by the early 1990s, Ramachander started suffering severe episodes of internal bleeding and painful knee joints. “In haemophilics , internal bleeding without any apparent cause or trauma can cause permanent damage to the joints and can lead to chronic disabling pain syndromes. In fact, my husband started suffering these episodes from the early 1990s.”
This turn of event led Ranjana into a phase of her life wherein accepting each day with Ramachander’s fluctuating health became a challenge.
In 1992, Ranjana and Ramachander started “The Haemophilia Society” at Cunningham Road in Bangalore. “Dr Cecil Ross, an eminent haematologist at St. John’s Medical College enlightened us that there were many other less fortunate haemophilics in Karnataka, who had been diagnosed and registered at their Haematology department. Our discussion with Dr Cecil Ross was an eye opener, since most of the haemophilics could not afford timely transfusions which were expensive.”
Starting and running the Haemophilia society in a way mitigated their sorrow. The couple also interacted with other PWH (Persons with Haemophilia ) who had started Self-Help Groups not only in Karnataka, but also in Kerala and other States. In 1999, the stress of having had to deal with Haemophilia right from his childhood ultimately took a massive tool on Ramachander. One night after having dinner, Ramachander died of cardiac arrest. Ranjana confesses that she was numb and felt that she would not be able to carry on the work of the Haemophilia society. “Ram’s spirit kept on motivating me and reminding me that it was my duty to extend a helping hand to ‘PWH’ from lower socio-economic status,” she says.
Due to her persistent, ‘never say die’ attitude, the Bangalore Chapter of the Haemophilia Society got a one Crore rupee grant from the Karnataka Government in 2005.
“Unlike in USA and several other countries, in our country, Haemophilia has not yet been categorised as a disability,” says Ranjana who hopes that the networking between haemophilics and the co-ordination between the inter- city chapters in Karnataka could become a ‘role model’ to other States in India. The grant from the government has also helped in providing Scholarships to below poverty line (BPL) Haemophilic students. “Because of the availability of the timely treatment, the quality of life of haemophilics has improved, especially that of the students,” says Ranjana.
Her commitment to the Haemophilia society is obviously deep-rooted and her message to the PWH (Persons With Haemophilia) and their families is reflected in the quotation written by a volunteer in her office which reads, “Disability does not mean inability, well or ill you live only once!”
