Embracing Resilience – The Journey of an Asian Male Living with Neurofibromatosis Type 1 and Facial Deformities
Life’s challenges come in many forms, and for some, the journey is exceptionally arduous. For Amit, an Asian male born with Neurofibromatosis Type 1 (NF1) and facial deformities, navigating childhood, adolescence, and adulthood was and is an emotional rollercoaster. This blog delves into the struggles and triumphs of a young man who has faced adversity with courage, resilience, and the determination to find acceptance and beauty in uniqueness.
As Amit states: “If there was better representation in the media, on social media, films (think of all the villains with facial deformities) and TV, I think that acceptance would be far greater than it is today. It’s going to take time for the people who have visible conditions and rare diseases to learn to accept who they are, embrace who they are, and celebrate who they are before we can expect others to accept us and others to give us time and appreciation. We need to do a bit of self-love, a bit of self-acceptance.”
“I hope we do get the acceptance and it’s not going to come overnight. It’s going to take time from both parties. It needs greater acceptance from society.”
Living with Neurofibromatosis Type 1
Neurofibromatosis Type 1 is a genetic disorder that causes tumors to form on nerve tissue. While the severity of NF1 can vary significantly from person to person, facial deformities are not uncommon. As a child, Amit’s family began to notice these physical differences, which set him apart from his peers. He was just two years old when he was diagnosed and his father brought him to the UK in the hope of finding better treatment. Growing up, he faced challenges that most of us couldn’t fathom.
The early years were marked by innocent questions from classmates, curious stares, and insensitive remarks that left deep emotional scars. Finding acceptance in a world that often values appearance over substance was an uphill battle.
The bullying and social isolation
Throughout school, Amit endured bullying and ridicule, making him feel like an outsider. Social acceptance was a significant worry, and Amit dreaded going to school each day. The pain of being ostracised for something beyond his control was deeply distressing. He sought refuge in solitude, retreating from social interactions to avoid further hurt. The desire to fit in became a distant dream, and the search for authentic connections seemed almost impossible.
Going to school was challenging. The only friend I had was the support teacher because a lot of people didn’t want to be friends with me. She’s actually now a family friend. So whenever I meet her, we, we have these conversations, and you know, she told me the other day that there were many occasions we would just sit at lunch and I’d try and go out and, you know, I just couldn’t, I couldn’t integrate with other children. A lot of people were scared, a lot of people were worried they’d catch what I’d got. A lot of people didn’t want to be friends with me because they thought the cooler kids in the classroom wouldn’t want to be their friends if they were friends with me.
As the NF1 progressed, so did the physical differences, making everyday interactions even more challenging. At the age of 11, in year seven, I was told that my eye needed to be removed. You know, it’s a pretty daunting matter. And to digest that psychologically was a huge thing for me. Especially because I knew after I’d had the eye removed, I wouldn’t have the prosthesis for at least a year. So I’d be wearing an eye patch and going into school, wearing an eye patch, and that was daunting. Challenging, so that was a very difficult period when they removed the eye.
“I made a TikTok video, sharing my story, talking about my condition, talking about helping and inspiring people. And now 45 days after launch I have some 52,000 people following me. I never thought that would happen. But there’s a lot of people following and there’s a lot of schools now coming out to me and saying, can you come to our school? So it’s all about the education of school children, parents, friends, and society to reduce stigma and isolation. I think together we can make differences, positive differences, positive impacts, and my mission is to normalise visible differences.”
Family support and coping mechanisms
Amidst the hardships, Amit found solace and strength in his family’s unwavering support and love. Their unconditional acceptance played a pivotal role in bolstering his resilience. Additionally, he discovered coping mechanisms like sports that allowed him to express himself freely and embrace his uniqueness.
“I remember my dad was one of the biggest contributed factors of my confidence. The way my dad and my family brought me up, my dad never made me realise that I even have a condition. The way he dealt with me was completely as if I was just one of the other siblings. And that really helped the mentality of normalizing things for me.”
As he entered adolescence, Amit chose to confront the challenges head-on. He sought other ways to address the emotional toll of living with facial deformities, which proved instrumental in boosting his self-esteem. Slowly, he began to build a sense of self-worth, recognising that his value extended far beyond physical appearance. “The turning point, I think, was when I started accepting who I was, and I started, you know, realising unconsciously that, you know, I can’t really change who I am, and I can’t change the way I look, and the condition I have, but what I can do is try and be who I am.
So, I started playing cricket. I joined the cricket club, and suddenly, I went from the guy who has this rare disease guy who plays cricket. It’s that shift in people’s mentality and people’s perceptions about people who have diseases that you are not the disease. I’m not only recognised as Amit, the guy with the neurofibromosis, or Amit, the guy with NF, that one. I’d rather be recognised as Amit, the guy who plays cricket, or now Amit, the guy who’s going on trying to raise awareness and trying to help support, inspire people around the world about this subject.”
Amit’s condition is hereditary, and he has a fifty percent chance of passing it on. This brought further challenges from the Asian community. “So when I was at the age of getting married, a lot of people in in the community were saying, who would give their daughter to him? Somebody even came up to me and said, oh, put yourself in the shoes of a father. Do you want your daughter to marry someone who’s got a condition like yours? It’s unbelievable that someone can say that to you straight to your face. Then I met my wife, and when we moved into the dating phase, her family was completely against us getting married. One of the biggest reasons for that was how will the children turn out?
So now Amit and his wife are on a new journey, working with the genetic consultants to see if they can mitigate the genetic risks of passing down the faulty genes and how or if they can be removed in pregnancy. This in itself has opened up questions for Amit and his wife. Amit, in particular.
“Ultimately, it came down to do I want my child to go through what I’ve been through? And the answer is no. But as with all things in my life, it puts a huge mental strain on me, but we are now in this phase where we’re considering our options, we’re talking to specialists, and seeing what could be done.”
Advocacy and Empowerment
As an adult, Amit transformed his struggles into a platform for advocacy and empowerment. He has now become an active voice within the NF1 community, educating others about the condition and promoting awareness about facial differences. By sharing his story, he aims to inspire those facing similar challenges and eradicate misconceptions surrounding facial deformities. Reflecting back on his school days, Amit believes that:
“You know, I felt like I had two choices in life. I could either sit back and feel sorry for myself or I could get up and be who I am. So the journey from when I had the eye removed, the eye patch, the name calling, the bullying, you know, going into school, being called Captain Hook, Popeye, the sailor man. All these names that still come back to and haunt me sometimes was really depressing and really, really upsetting. I tried to use my personality. I try to say to myself, accept who you are. Embrace who you are, celebrate who you are, and go out and be yourself.”
Rather than succumbing to the societal pressure to conform, Amit has chosen to redefine facial deformity on his own terms. He challenges conventional beauty standards, emphasising that true beauty lies in accepting and embracing individuality and diversity. Through his advocacy work, he hopes to foster a more inclusive society that celebrates differences rather than stigmatising them.
The journey of an Asian male growing up and living with Neurofibromatosis Type 1 and facial deformities is a testament to the indomitable human spirit. While the path was fraught with challenges, Amit’s resilience and determination allows him to rise above adversity. By embracing his uniqueness and advocating for awareness, he has become an inspiration to many, proving that true beauty emanates from within. Through his story, we learn that by accepting and celebrating our differences, we can foster a world that embraces and uplifts every individual, regardless of their appearance.
Come and meet Amit at RAREsummitt23!