Xtraspecial
Born to parents Mallikarjun and Gauravva, Santosh Vani is 33 today. Living in Margao, this person who has blood disorder haemophilia, did his education from open school as he could not go to school on regular basis due to his illness. He recalls that till class 7 he could run, then running stopped, and he could walk slowly.
“In class 8 I was 35 % absent due to my ailment, and in class 9 it went to 50 %. I could not answer my SSC and had to stop schooling as I used to get admitted frequently. This continued and a time came when I was on bed all the time,” says Santosh who underwent an operation before he could answer SSC exam and hence missed the exam.
“After the surgery I was on wheelchair for seven long years. There was a gap in my education during this period. I could begin only after I gained some strength and confidence, and answered my HSSC,” discloses Santosh who was diagnosed with the disorder in 2002 when he was 10.
During those days there was little awareness about the disorder. He used to be admitted in GMC. The doctors plastered his knee and gave painkillers for relief and sent him back. A thorough blood check up in Mumbai made it clear that Santosh had haemophilia and having protein injections was the only remedy.
“Once I was admitted to hospital and was to be given discharge, but the same day I fell from the bed and hip bone was dislocated. I got fit, probably a reaction of the injection I was administered for shoulder swelling. I underwent a total hip replacement surgery. I was told to rest for two months in horizontal position, keeping pillow under my legs for support, but later when I tried to get up, the legs got stuck in that position, and I could not walk anymore. So again I was on bed for a year.”
Later Santosh went to Pune with the help of Hemophilia Society Panaji Chapter for physiotherapy – prophylactic treatment for six months and managed to walk with the help of a walker. “Now I take a stick for support. I can walk only for 10 to 15 minutes without stick, as the knees have developed permanent deformity,” says Santosh who did a petty part-time job at a courier service office after passing class 12. He now works in pest control office as office assistant for the past 18 months, and this is his first full-time job.
Santosh advocates for awareness in the society on haemophilia, “It’s a lifelong suffering, regular protein injections are must. Muscle bleeding is common; there’s no blood clotting after any injury, hence the child cannot indulge in outdoor sports. My disability is 90 %. I did not get this injection in my childhood, which has led to the deterioration of my muscles and bones. It is a genetic disorder and tests should be done during pregnancy. These babies have to be taken care till they understand that running, getting bruises, falling is not good for them. The bleeding does not stop, clotting does not form, and the child can bleed to death, if not rushed to the hospital and protein injection is not administered.”
Haemophilia was brought under the 2016 Disability Act, and is now recognised as one of the 21 disabilities. However, it is still to be brought under job reservation category. There is no insurance facility. The expense during emergency bleeding is immeasurable. Outdoor sport is a strict no. If the person cannot continue education, there is no job guarantee. How long can the parents fend for their child, questions Santosh.
“I had applied for bike distributed by the government to the persons with disabilities. But my application has not received any response. I cannot travel by public transport, as climbing the bus is not possible due to my crooked legs. Currently I'm receiving latest treatment in Goa Medical College injection called ‘Hemlibra’ which has lead to zero bleeds and thus I can work. My father has to drop me from my home to my office daily and pick me up after office hours. I feel very bad that he has to do this at this age. But sadly, there is no option. All I can do to upgrade my knowledge without going outside, through YouTube. Due to irregular schooling my proficiency in English is not up to mark. What future do I have?”
Empowerment of the haemophilia patients is the need of the hour. As a long-time advocate for haemophilia patients, Sarita Chavan, president of the Hemophilia Society, Panaji Chapter, has been tirelessly working to improve their lives since 2015. Her dedication to providing critical support, including donations of clotting factors, financial aid and rehabilitation has made a tangible difference in the lives of those affected. Government support, including seed capital for start-ups and businesses, along with societal awareness is must.