Contact CamRARE

Contact CamRARE

Amit Ghose

Motivational speaker & Coach

Amit Ghose

I am a Neurofibormatosis type 1 patient and an advocate for people living with a visible difference. I want to share my real live lived experience to help, support and inspire people.

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. 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. 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. 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.

Recently we spoke to Amit and created two articles about his experience of growing up rare. You can read these posts here:
https://www.camraredisease.org/embracing-resilience-the-journey-of-an-asian-male-living-with-neurofibromatosis-type-1-and-facial-deformities/
https://www.camraredisease.org/enhancing-facial-recognition-ai-technologies
Amit has also been involved in a number of media articles and films
https://www.indy100.com/lifestyle/amit-ghose-prosthetic-eye-tiktok

The Reflection Room: RAREnthood

Amit joins other rare young(ish)! men for a fireside chat exploring the diversity of experiences for men living with rare conditions growing up and considering parenthood. Diagnosis differences, family life and relationships, the impact of hospital stays on education and careers, rare parenthood, cultural perspectives, mental health…nothing’s off the table.

My three wishes for rare diseases are:

  1. More acceptance and inclusion, especially as AI develops.
  2. Better representation in mainstream media.
  3. Normalising having a disease and not being singled out because we have some form of condition.

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