Thiruvananthapuram, June3, 2019: Latheesha Ansari dreams of clearing the civil services, and she has the determination to see it through. However, she also has a rare genetic disorder that threatens to bring her down.
During her first attempt at cracking the preliminary examination conducted by the Union Public Services Commission on Sunday, the 25-year-old woman’s parents had to bring along two oxygen cylinders all the way from Kottayam to the test centre at Thiruvananthapuram. The reason? She suffers from brittle-bone disease and pulmonary hypertension, which requires her to be on constant oxygen support. Until now, her body has suffered as many as 400 fractures.
“The paper was easy, and I hope and pray that I clear it,” says Latheesha Ansari, who is competing in the general quota. “I am determined to crack this examination because that would inspire many others like me to do it too.”
Her parents are neck-deep in debt. “We spend around Rs. 25,000 per month for Latheesha’s medical and supportive care, which includes the use of oxygen cylinders round the clock. There are many loans to repay too because we keep borrowing from well-wishers,” says her father, who runs a small eatery.
Latheesha Ansari completed her post-graduation in commerce and even began coaching for the civil services after paying the first down-payment, but couldn’t continue upon being diagnosed with pulmonary hypertension. “I desperately need portable oxygen support because I have to move around taking competitive examinations. I have completed my education and need to work. I take motivation classes. I cannot stay inside the house all day clinging onto heavy oxygen cylinders,” she says.
A highly motivated person, Latheesha Ansari loves playing the keyboard when she is not cramming for the examinations. Although a doctor recently gifted her an automatic wheelchair, her parents still have to carry her around with utmost care on occasion. For instance, even the examination centre does not have a ramp for the differently abled.
Standing by the family is Latha Nair, who runs a Thiruvananthapuram-based non-governmental organisation – Amrithavarshini – for those suffering from brittle-bone disease. “The government needs to understand that this is a rare genetic disorder that affects just one in 20,000 people. It has to be brought under the rare disease list and included in the law meant for people with disabilities. There are many afflicted people like Latheesha who are struggling for dignity of life and financial help,” she says.
Osteogenesis Imperfecta or brittle-bone disease is the term used to describe a group of genetic disorders that mainly affect the bones. It causes bones that break easily. Pulmonary hypertension, on the other hand, is a type of high blood pressure that affects arteries in the lungs and the heart.