“I am the youngest of six children. I am an aunt to six nieces and nephews with one on the way. We are a rather close and opinionated lot.”
Nineteen-year-old Nisha Lobo is accustomed to drawing instant attention. Why is that? Her mother Aloma Lobo reveals, “Nisha has a rare genetic condition called Lamellar Ichthyosis. It is an autosomal recessive disorder which is very apparent at birth and continues throughout life. It is characterised by scaly skin which is constantly being shed and causes significant disfigurement of the person. Nisha is also visually impaired with just about 15 per cent vision in one eye. She had no eyelids at birth but had oculoplastic surgery when she was four years old in London.” But that is not the reason why she is being talked about.
Recently, this brave young girl made an impact with her impressive speech at a TEDx Talk with her confident narrative. “It is a condition that requires constant and continuous medical management which has become routine and an everyday part of my life. It is a condition which affects one in 600 to 1,000 people, which is why I have visual impairment, which means I only see just about 15 per cent with one eye. I live to think I see a lot,” she says with a smile.
So getting back to drawing stares, if you assume it makes this teenager uncomfortable, you are in for a surprise. “I am used to people staring at me,” she responds with faint amusement, adding, “It’s mostly curiosity and nothing else.”
Two years ago, Nisha had made an impact in the deeply moving Vicks ad where her story was recreated visually. The TedX organisers had seen that ad and decided to contact Nisha’s mum, Aloma Lobo.
In her Ted talk, Nisha addresses people’s reaction to her skin condition with an anecdote, “Four little kids sit in front of us at church. They couldn’t meet my eyes. I would smile and wave but got no response. The same thing happened the following Sunday, when I waved and smiled. I got a glimmer of a smile. I continued with this practice the next Sunday. This time, they ran to me and sat next to me.”
If you hope to dig out some horrific confessions, you are gonna get none from this girl. Tell her that children can be cruel in schools, and does she have any memory to share, she calmly responds, “In the beginning, in kindergarten or so, kids were scared but it got better later. My friends gradually understood my condition and were not frightened anymore. When I moved schools — from Sacred Hearts to Trio International School after third grade, by that time everyone was at an age where they are more tactful and understanding.”
It’s not that Nisha lives in denial. Far from it, she talks about her condition in her admirable TedX speech. “In India there is a stigma attached to genetic conditions, families are shunned, mothers are blamed, children are ignored or hidden, often if a doc finds out he advises pregnancy be terminated as if these children don’t have a right on Earth. My birth parents had relinquished me when I was one week old, three weeks later, I was adopted by my parents into their home and heart.”
You can’t help but ask her if she nurses any grudges towards her birth parents, and she is dismissive, “I have not thought about it, and it is not even a thing to think about.”
She is a happy young girl with dreams to teach. “Maybe history or English, I don’t know yet. I am currently taking a gap year off after I finished school last year, and I plan to apply to colleges soon. I am interning as a copywriter with a digital marketing company right now,” says the girl who advocates the philosophy of being responsible for your own happiness in her TEDx Talk. “Happiness is not around you, it’s inside you, if I had beauty or popularity would I have been happier, I was happy being born and even after my skin condition, I continue to be happy for my amazing relationships, I have no resentment towards the fact I have a skin condition, I am the only person who can affect my happiness, I see myself as a young woman on the threshold of life, I cherish gifts given to me and contribute to society,”she says....