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“People have wrong ideas about genetic disorders. They think these conditions are infectious”

The attitudes of people who are equally ignorant about science and about disability can affect and even endanger a disabled person’s life. Knowing full well our society’s misconceptions about disability, the parents of Priyanka Mishra (26) from Patna did not inform her school that she had the inherited blood disorder Thalassemia Major (TM).
 
TM, which affects the body’s ability to produce red blood cells, requires periodic blood transfusions. Fortunately, Priyanka was diagnosed when she was just a few months old since she comes from a fairly well-to-do and educated family: her father Manoj Mishra (54) is a real estate businessman who has always had an interest in medical science; her mother Damini Mishra (45) was in politics till 2020. 
 
Priyanka studied in Kendriya Vidyalaya, Ranchi. Her parents feared that she would be treated differently or shunned by her classmates because of misconceptions about disabilities – they might believe that a genetic disorder like TM is a communicable disease. So they decided not to reveal her condition. Therefore, although Priyanka found it difficult to even carry her books, for example, she hid her physical feebleness and managed as well as she could. Her blood transfusions would be carried out to coincide with a second Saturday, a school holiday, thus giving her time to recover. As she grew older the frequency of her transfusions also increased.
 
In 2019 she had a medical emergency. Fever turned out to be a consequence of malaria, and on returning home after being administered a glucose drip for her weakness, her exhaustion remained and so she got a transfusion. This went badly, and a series of issues occurred: loss of consciousness, difficulty in breathing, a referral to a Kolkata hospital which proved unsuccessful, and finally back to Patna to the Indira Gandhi Institute of Medical Science where she was advised to take Desferal injections. Treatment took a year, and ever since, she has been mortally afraid of getting a fever.
 
Once she got over her crisis, Priyanka’s thoughts turned towards helping others with the same condition. In 2020, with her parents’ support she started an NGO, the Bihar Thalassemia Parents Association. She has received many awards for her excellent work in supporting children with TM. Besides coordinating with blood banks and hospitals the association also helps children get a bone marrow transplant which has be done before the age of 10 and offers the possibility of a cure.
 
Priyanka’s younger sister Jyotsna (24) is a teacher in DAV school in Ranchi. She is married to a software engineer Bharat Mishra (28) and they have a son and a daughter aged four and three. The sisters studied in the same school and Priyanka says Jyotsna was always looking out for her. “Although she is my younger sister she has taken care of me like an older sister,” she says.
 
Since she is physically frail, Priyanka says she has never been interested in having a family of her own because she anticipates being rejected. “People have expectations about a woman’s appearance, that she has to look a certain way, so I am not sure if I will find a life partner,” she says. “I don’t know if anyone will accept me with my condition.” Nevertheless her parents are looking for a match for her – their younger daughter already having a family while the older one remains single has no doubt created social pressure that is weighing on them. Priyanka says she needs more time to think about it. Things will be difficult if her partner considers her a burden. Unless she finds someone who fully understands her needs and situation, it would be unwise to get married.