Hemophilia – Beating the ‘Bloody’ Disorder

It is difficult to believe Mr. R. Satyanarayanan is a hemophiliac. This ‘patient’ leader balances a full time job in the News department of a national daily, The Hindu, while actively working through the Hemophilia Society, Chennai Chapter, to spread awareness on this bleeding disorder and to move the State government to make medication available for fellow hemophiliacs, especially children. An interview with R. Satyanarayanan, Treasurer, Hemophilia Society, Madras Chapter brings to zilch the general belief that hemophilia can lead to depression and even prompt suicidal tendencies. His happy life with an understanding wife, two pretty little daughters, a job and a mission to reach out to suffering hemophiliacs, belies the fact that he needs an infusion of clotting factor concentrate into his veins on a daily basis to prevent continuous bleeding.

He has suffered all the known bleeds—oral bleed, elbow bleed, ankle bleed, knee bleed, intracranial bleed— you name it, he’s had it! His blood group is O negative which made it even more difficult to get the required blood for transfusion during his school and college days, before the early 90’s when the Factor concentrateshadn’t arrived yet in India to improve the quality of hemophilia care. Yet he was active in Sports and represented his college in the Table Tennis Divisional Championships. He credits Dr. Mammen Chandy of CMC, Vellore, South India, with encouraging him to start playing an indoor game to take his mind off the ailment.

True enough, an active life changed Satyanarayanan’s mindset—he learnt to be positive, independent and not use his bleeding disorder to stay down and defeated. He is now the Pied Piper whom children follow for pep talks and counseling in order to stay on top and not buckle under the pressure of hemophilia management.  His treatment is home-based and he has learnt to recognize the stiffness in joints, the disorientation, the headaches, the convulsions/seizures as alarm bells for the necessary infusion of factor concentrate into his vein.

Born and brought up in Vellore, South India and now working in Chennai, Satyanarayanan observes that staying near CMC Vellore helped hemophilia management in his early years. He was lucky that he had supportive teachers and friends in school, college and now at his workplace. But his interaction with hemophiliac children these days suggests that it is getting more difficult for these children to live a normal life in a world that is getting more competitive and less sympathetic and accommodative.

The factor concentrates required in hemophilia treatment in India are imported; the cost is highly exorbitant and hence the burden is heavy on the patient and the family. 500 units of factor concentrates that are needed for infusion in the adult body 8-12 hours, costs Rs. 6000 each time and half the factor for a child costs Rs. 3000. Repeated infusions trigger the development of antibodies to clotting factor, called inhibitors and these may require larger doses of factor infusion. Insurance and social security in advanced countries allows hemophiliacs to pump in concentrates and even go out and play football without worrying too much about the cost factor.

Hemophiliacs from other parts of Tamilnadu until recently had to travel all the way to Chennai to avail the concentrates stored at the Hemophilia Society at VHS, Chennai. Satyanarayanan actively campaigned through the Hemophilia Society to facilitate availability of factor concentrates in different parts of Tamilnadu. For the first time in India, the government of Tamilnadu allocated Rs 14.36 crores in the State budget to make clotting factor replacement such as Factor VIII, Factor IX and von Willebrand factor available at government medical colleges and hospitals in Tamilnadu from last year, free of cost.

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Explaining Hemophilia, Dr. Varadarajan, Hematologist, President of the Hemophilia Society, Chennai Chapter says, “Hemophilia is a rare bleeding disorder that occurs in males, transferred by an asymptomatic female, the mother. During infancy, the baby develops subcutaneous hematoma and by the first year when the baby begins to move around, the bleeding disorder becomes evident. The main problem faced by the patient is frequent bleeds, more often in the knees, making movement very painful and difficult. At present diagnostic and treatment facilities are available to improve the quality of life for those living with hemophilia.”

Excruciating pain is a part of life for Satyanarayanan, especially at times when factor infusion was delayed in unforeseen circumstances. The pain bonds him closer to children who are struggling to learn to live with hemophilia. Ably assisted by his wife Mrs Rama Satyanarayanan, he continues to actively campaign to improve the quality of life for hemophiliacs in India. Satyanarayanan’s life is a stellar example for all people to stay on top of their shortcomings and his message to all, especially to fellow sufferers on World Hemophilia Day 2011 is to beat hemophilia, the bleeding disorder by not bowing down to the challenges of hemophilia management in day to day life.

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Source-Medindia