Living with Neurofibromatosis Type 1: A Journey of Resilience, Transformation, and Impact

I was born with a rare genetic condition called Neurofibromatosis Type 1 (NF1)—a condition that has shaped much of my life’s journey in ways I could never have imagined. Growing up in Silchar, Assam, India, as the youngest of four siblings, life wasn’t always easy. At the age of three, my family made a life-altering decision to move to the UK. Hospitals became my second home. I underwent 26 surgeries, each one a testament to my resilience and my family’s unwavering support. Living with NF1 meant navigating both physical and emotional challenges—pain, uncertainty, and the reality of being different. But through it all, I learned to push forward.

Despite my condition, I refused to let it dictate my future. I had two choices: let NF1 define my limitations or find my own path. I chose the latter. I graduated in 2013 and entered the corporate world, working in sales for over 10 years. Sales is a tough industry—it requires persistence, resilience, and the ability to handle rejection. In many ways, I had been training for this my entire life. Every door that closed in my face, every client that said “no,” only fueled my determination. The corporate world didn’t care about my NF1—it cared about results. I thrived in an environment where hard work and confidence mattered more than appearances. But deep down, I knew there was more to my journey than just sales targets and commission cheques.

Life took a dramatic turn after I got married. One day, my wife, Piyali, suggested something that seemed almost absurd at the time—she asked me to create a social media video to help others build confidence. I laughed. Who would listen to me? What difference could I possibly make? But something inside me told me to give it a shot. I recorded a TikTok video, speaking about confidence and self-acceptance. What happened next was beyond anything I expected.

The video went viral- over100,000 views in just a few hours. Suddenly, my inbox was flooded with messages from people saying how my words had helped them. That one video changed everything. It proved that my voice mattered, that my story had the power to inspire. Encouraged by the overwhelming response, I started posting more, sharing my journey with Neurofibromatosis, resilience, self acceptance, and confidence. The more I shared, the more people connected with me. It wasn’t just about me anymore—it was about helping others find their strength too

One day, my manager at work invited me to speak at his daughter’s school. I had never done public speaking before, but I agreed. That one decision changed my life forever. During the talk, a young girl raised her hand and asked, “Do you have one eye? Can you drive?” I answered yes. She then told the entire room that she was blind in one eye— something only her teachers knew. That moment was emotional, not just for her, but for everyone in the room.

A week later, I received a newsletter from the school. It featured a story written by a young boy awaiting a heart transplant. In the article, his mother shared how, after hearing my talk, her son had come home and said, “I want to be a motivational speaker like the man who came to our school.”

I sat with that moment. I realised—this is what I was meant to do. I went back to work and handed in my resignation. I had no plan, no safety net, no idea where my next pay cheque would come from. All I knew was that I wanted to create impact and add value. Walking away from a stable career to pursue my purpose was terrifying. But what I’ve learned in life is that the greatest things often happen when you step into the unknown.

I started speaking at schools, talking to students about confidence, bullying, and resilience. Then, I started working with organisations, helping people understand adversity, mindset, and breaking barriers. Most importantly, I kept raising awareness about Neurofibromatosis—not as something that held me back, but as something that had pushed me forward.

As I continued speaking, an opportunity came my way—one I never saw coming. I was approached about a role with the NHS in Birmingham as a Diversity, Equity, and Inclusion (DEI) Business Partner. When I had a call with the Head of Inclusion, he told me about the role and encouraged me to apply.

I hesitated. I thought, I don’t have experience in this field. But then he said something that stuck with me: “You have lived experience. That is more valuable than anything on a CV.” When I read the job description, I saw something that felt like it was written for me. The role was about reducing bullying and harassment—the very things I had been speaking about in schools and online. I applied, I prepared relentlessly, and I got the job. From leaving my job in sales without a backup plan to working for the largest employer in the UK, my journey had come full circle.

Today, I proudly stand as a content creator, keynote speaker, and DEI Business Partner. But most importantly, I stand as someone who refused to let NF1 define my limits. I used to believe that my condition was something to be hidden, something that made me less than others. Now, I own it with pride. I’ve realised that in life, we always have two choices: 1. Sit back, feel sorry for ourselves, and blame our circumstances. or 2. Get up, take control, and turn our struggles into our strength. I chose the second option, and it has taken me on a journey beyond my wildest dreams. If you’re reading this and you feel like life is against you, I want you to know—you are stronger than you think. You have a story that can inspire others. You have a purpose waiting to be discovered. Whatever you are going through, it does not define you. It prepares you.

NF1 is a part of my story, but it is not my whole story. I am more than NF1. And so are you. This is me. Take it or leave it.

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The Boy Who Played Cricket

Gail Reid was appointed artist for the 10th Appearance Matters International Conference organised by the Centre for Appearance Research in June 2024, and a personal highlight of hers was the unveiling of a commissioned portrait of Amit Ghose.

Amit, who was a panelist at the conference, was actively involved in earlier livestream portrait planning over Zoom, having conversations with Dr. Maia Thornton from CAR, and the artist to explore his experience around being seen, how he chooses to reveal or conceal his visible difference, which elements of his life story might feature, and their combined hopes for the finished portrait.

Amit described how his cricketing ability led to social acceptance amongst his peers at school, for it was only when he plucked up the courage to ask to bowl that he went from being "Amit, the boy with the funny face, to Amit, the boy who plays cricket." As portraiture is an opportunity to amplify elements of a person's story, it was decided to focus on his cricket.

Gail said, "I hope to make work that challenges conditioning around appearance, particularly the damaging beauty standards that are normalised in society. I feel Amit has a very strong voice in this field, and the ideal 'up for it' personality for a portrait sitter. We were very aligned in our determination to convey his lived experience in the portrait. I hope it invites the viewer to consider their own response to the Visibly Different Community generally, and the NF Community, in particular."

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