In any traditional Indian hunt for brides and grooms, family history plays a significant part, particularly a history of disability. Inherited “diseases” set the alarm bells ringing. But in 2013, Uttam Kumar from Minapur village in Bihar made it a point to tell his bride-to-be Chanchal Kumari that he had haemophilia, although his family would have preferred secrecy. Uttam felt it would not be fair to hide his condition from his future wife, since theirs was going to be a relationship for life. She appreciated his honesty and agreed to marry him. Today Uttam (32) and Chanchal (29) have two daughters: Ashi Aryan (8) and Anaya Aryan who is three and a half.
Haemophilia is a rare genetic disorder that affects the blood’s ability to clot; when you sustain a cut it bleeds for much longer than usual. People with haemophilia may have bleeding gums or prolonged nose bleeds or large and deep bruises on the skin. Uttam was just six months old when blue bruises showed up on his body. His parents knew all about haemophilia since his mother’s brother had it, and therefore they quickly took him to hospital. Dr A.K. Thakur, who diagnosed his disorder, advised his father to connect with the Haemophilia Society and he duly registered with its Patna Chapter in 2003. “The Society has played a very important role in my life with the support and information they provide,” says Uttam.
Uttam poetically describes persons with haemophilia: “Our bodies are like a raw clay pot that gets dented or broken with the slightest pressure”. Even trimming nails is risky, for a tiny nick can bleed non-stop. He says his blood disorder is caused by a “Factor VII deficiency”, a mutation in the F7 gene of the parents, who may merely carry the gene and evince no symptoms of the disorder. Undue pressure on the joints would cause internal bleeding that required a Factor VII injection to allay the excruciating pain. “At the time it was only available at the Patna Medical College and Hospital and it cost Rs 4,500, which was my father’s monthly salary,” says Uttam.
Ramjanam Das, an Indian Railways employee who retired in 2011, had to sell part of his farmland to pay for his son’s injections. Since the age of six, when excess bleeding affected his right foot, Uttam has sustained injuries periodically. Once, when he was around eight, he was going to school by autorickshaw when his ribs hit one of its iron bars, causing internal bleeding. When he was around 18 his left leg hurt so intensely that he considered taking his own life.
When his parents admitted him to a local private school they informed his teachers of his condition. “My teachers were very caring,” says Uttam. “They would not hit me when I didn’t do my homework! The only punishment was being sent out of class.” He was excused from physical training and his classmates were instructed to not make any kind of forceful contact with him. “Since I couldn’t go out and play during the games period, my teachers set up a carom board section for my benefit and gave me a permanent seat there,” he says. “Looking back, I feel grateful for all that they did for me.”
After school he chose to do his BCA through IGNOU the national open university, got an ITI certificate, and apprenticed with South-Western Railways. In fact since he has a disability certificate he has been selected for a Railways job but he was apparently told that he would be appointed only after they created a special post for him, considering his condition. His younger brother Gautam Kumar (28) has just finished post-graduation and his older sister Seema Kumari (38) is married with two children.
Meanwhile, Uttam has created a WhatsApp group called “Appreciate” for those with haemophilia, and people across India have joined it. Since there is such a stigma around hereditary disabilities and a significant lack of knowledge about haemophilia he wants to spread awareness about this disorder. He assists others with haemophilia by providing information and uses his own experiences to motivate them. “You just have to be a little careful when you move around, that’s all,” he says. He rides a motorbike, loves travel, partying, feasting, and listening to music. In short, he lives life to the full!