
APRIL 17: For 16-year-old Niketu Shah the most memorable occasion in his life is a school picnic he went to ten years ago 8211; it was the only one ever in his life. Unlike his friends and teachers who refuse to take him along, his Standard II teacher had agreed to take care of him that day.
A student of Mithibai College, Niketu suffers from hemophilia, a blood related disorder. But far more traumatic than the pain in his joints, is the terrible state of loneliness and the repeated reminder 8211; I8217;m different.Niketu was one of the 100-odd hemophilia patients and their families who had gathered at a gurudwara in Santacruz this evening on the occasion of World Hemophilia Day8217; celebrated by the Hemophilia Society Bombay Chapter and the Institute of Immunohematology department of KEM hospital. Hemophilia is a genetic disorder which causes excessive lifelong bleeding. Only males suffer from the disorder while females are carriers.
Bleeding is caused due to the absence of the clotting factor in the patient8217;s blood.Repeated bleeds in the joints common sites being knee, ankle and elbow and muscles, unless promptly treated lead to progressive clotting.As hemophilia patients lead normal lives, social ostracism Shah suffered is not just unreasonable, but also reflects ignorance of educated adults. Similar misconceptions prevail where the issue of marriage is concerned. quot;A man affected by hemophilia can get married and lead a normal life. In case he has a daughter, she could be a hemophilia carrier, his son would have no problem,quot; explains Dr Deepika Mohanty, Director of the Institute of Immunohematology department at KEM hospital. She reveals, quot;If a girl is a carrier, she has no problem. Within the first trimester of her pregnancy, we can detect if the foetus is hemophilic.quot; Dr Devila Sahu, vice president of HSBC says due to frequent bleeds and the pain involved, hemophilics miss as much as 50 per cent of their school life. But Renu Nihlani, the proud mother of 18-year-old Umesh, gushes about her son8217;s scholasticachievements.Nihlani says the credit for this success story goes to KEM doctors. quot;If a patient cuts himself, he must be rushed to a hospital and administered the blood factor immediately. We try to stock the blood in the refrigerator at home. Each injection costs Rs 1000,quot; said the father of Gurdit Singh Lughani. Dr Jayashree Kale, a rehabilitation expert, says, quot;A patient can feel a tightness in his muscles just before a bleed. At this time, his extremity should be supported with a splint and fomented with ice.quot;