What is NF?
Amit Ghose
Diversity & Inclusion Business Partner | International Keynote Speaker | Confidence & Resilience | Disability Confident Advisor
I was born with Neurofibromatosis, a genetic condition affecting about 1 in 3000 people globally. It wasn't until I attended the NF Summit hosted by the Children's Tumor Foundation Tumor Foundation in April that I truly grasped the breadth of challenges associated with this condition. Remarkably, I had the privilege of delivering a Keynote at the event.
One of the manifestations of my Neurofibromatosis is scoliosis, which led to surgery in 2017 to prevent further curvature.
Over the course of my life, I've undergone 24 surgeries related to my condition. Not to mention the time I was hit by a car at age 7, resulting in surgery to mend a broken bone—a consequence, perhaps, of my mischievous childhood.
The collective toll of these surgeries has been significant. Each procedure demanded a recovery period of 6-8 weeks, necessitating breaks in both my education and professional pursuits. These interruptions tested my mental fortitude, but they also contributed to its growth.
My current mission is twofold: to share my journey and insights to support fellow Neurofibromatosis sufferers and to advocate for greater visibility of our community.
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Moreover, drawing on 15 years of sales experience and firsthand knowledge of living with a visible disability, I aim to empower organisations to cultivate resilience and confidence in their operations. Recently, I had the honor of hosting a lunch and learn session with a prominent UK law firm, where I shared my experiences and key takeaways on adapting to dynamic circumstances—a skill honed through my numerous surgeries.
I take immense pride in my current pursuits, fueled by a singular purpose: to inspire and support individuals in unlocking their full potential.
As NF Awareness Month unfolds, I'm committed to amplifying my visibility, not only to shed light on Neurofibromatosis but also to celebrate our shared humanity.
Let us make NF VISIBLE!
Let's all take a moment to celebrate, who we are, how we are and what we are!
Efforts are underway in Malaysia to raise awareness ( https://mysihatpal.com.my/learn-nf1/understanding-nf-1 ) and improve the management of NF1. A multidisciplinary approach involving various medical specialists is recommended to address the complex needs of NF1 patients. Recent advancements, such as the availability of the drug Koselugo for treating pediatric patients with symptomatic NF1-related plexiform neurofibromas, highlight ongoing efforts to provide better treatment options.
Insurance Claims Handler at Transport for Wales
6 个月I have NF type 1 and had tumours grow inside causing me to have a bowel resection in 2010. I have also had breast cancer twice and one of my oncology team is looking at links of breast cancer and NF. There are many in my family with NF, my dad had it as did some of his siblings. My sister has it and some of my cousins and their children.
Risk Adjustment Practitoner
7 个月I have it and so does my daughter. Mine was spontaneous. I do need to start attending NF events.
Entrepreneur FinTech Leader | NED & Advisory | Mentor | Social Impact
7 个月I had no idea 1 in 3000 people have Neurofibromatosis Amit Ghose - that’s around 27,000 in the UK alone! Your valuable work to support this group and raising awareness generally about people with visible differences is much needed.
Attorney
7 个月I have the condition NF since birth and have done over twenty-three surgeries. The neurofibromas are all over my torso and also are hanging/adjacent to my spine. Those that are visible I chose not to hide them