World Hemophilia Day: Early detection, management, key to living with hemophilia

New Delhi An injection given to Tarun Kumars son when he was threemonthsold resulted in nonstop bleeding for a few hours The infant was referred to the capitals Sir Ganga Ram Hospital where the condition was identified as hemophilia a blood clotting disorderSimilar was the story of Karan 21 who used to regularly bleed from his mouth as an infant and had blue patches on his body The bleeding would recur every two hours His father Chandan took him to PGIChandigarh and later to a hospital in Mumbai where he was declared to be haemophilicRepresentational pictureBut despite the extremely serious nature of the condition Tarun Kumars son and Karan are leading near normal lives todayTarun Kumars son is now 21yearsold and is doing his graduation while Karan is studying in one of Indias best technical institutes So how are they coping with haemophiliaThe key to leading a better life with hemophilia is early detection and condition management and the responsibility for that lies with the parents There is no cure for haemophilia only management say doctorsParents should immediately highlight trivial injuries leading to profuse bleeding big blue patches on the body small wounds taking a very long time to heal and swelling in joints These are all symptoms of haemophilia VP Choudhry haematologist at Gurggaons Paras Hospital told IANSUnexplained nasal bleeding and blood in the urine or the stools are also indicatorsHemophilia is acquired at birth by children with a family history of the condition However it has also been observed that the disorder can be found in children without any family history as wellThe protein needed for normal blood clotting is absent in hemophilia so even a small injury can develop into a lifethreatening conditionChoudhry said that the incidence of hemophilia in India is 110000 and there are estimated to be 120000 casesSince hemophilia is discovered mostly in toddlers parents should know about it and stay alert for any signs Diagnosis and timely beginning of treatment with some caution can allow the child normal unhindered growth said Satish Koul internal medicine specialist at Gurgaons Columbia Asia Hospital told IANSHemophilia is a genetic disorder It is mostly found in boys and very rarely in girls said Choudhry who worked for 35 years in the haemotology department of AIIMSThe disorder can be managed by infusion of clotting factor using medicines to promote clots and healing avoiding bleeding exercising regularly avoiding contact sports maintaining good dental hygiene and following safe practicesMedical management of the condition includes infusing blood clotting factor concentrates into the body to prevent bleeding This is called prophylactic therapy and is administered on the basis of the patients weight It also entails giving injections to the patient whenever they bleed also called on demand prophylactic therapy The efficacy of the medicine contained in vials is measured in unitsA 20 kg baby requires 250 units of prophylactic therapy thrice a week and 3000 units a month It is an expensive treatment and costs more than Rs 30000 482 per month for a 20 kg child Choudhry saidA 15yearold patient weighing around 50 kg needs 1500 units of prophylactic therapy per episode and in a month needs three to four episodes costing around Rs 80000 to Rs 90000It is a very expensive treatment and my son now takes it only on an SOS basis said Tarun Kumar who has started a comprehensive hemophilia care centre which requires a haematologist orthopaedist and a physiotherapist at Sunflag Hospital in Faridabad in association with Pahuja Centre for Blood DisordersIn internal bleeding like brain hemorrhage inside the stomach and inside the hip the expenses will be unimaginable and run into lakhs of rupees Tarun Kumar addedInternal bleeding in the joints of knees or elbows can result in pain leading to the advanced onset of arthritisWe have sensitized the Haryana government and it is giving the antihemophilia factors injections for free at six civil hospitals since a year Tarun Kumar saidThe six hospitals are located at Gurgaon Faridabad Rohtak Yamunanagar Hisar and Ambala We appeal to the government that there should be no shortage of the injections Tarun Kumar saidParents who are educated rich and who have the option of getting reimbursed are going for prophylactic therapy And their children are leading normal lives added ChoudhryHe said prophylactic therapy is helping patients lead normal life in developed countries as they are rich and can afford itThe other pillar of successful hemophilia management is physical exercise Regular exercise is very important for these kids as it builds muscular strength which prevents them from frequent injuries so regular exercise should always be encouraged Gaurav Kharya consultant at BLK Super Speciality Hospital told IANSThese kids should refrain from sports where they have the potential to injure themselves Activities like brisk walking jogging running and swimming are very good for these kids he addedTarun Kumar said swimming is the best exercise as the chance of getting injured is very low since the individual will be swimming in the smooth medium of water adding that cycling and physiotherapy are also highly recommended