Latest news with #Neurofibromatosis
Daily Mail
20-05-2025
- Health
- Daily Mail
Man claims cafe refused to serve him and looked like they'd 'seen a ghost' because of his facial tumours
A man with a facial disfigurement says he was refused service in a cafe after customers stared at him like they had 'seen a ghost'. Amit Ghose has a genetic condition called Neurofibromatosis Type 1 which causes benign tumours to grow on his nerves. The 35-year-old was visiting his sister Shilu Sen in Wood Green, London, last month when they went out for a coffee. When he entered a cafe he says he noticed people were looking at him 'like they'd seen a ghost'. As Amit ordered a drink, he says he was told by staff that they were 'no longer serving'. Amit, an author and motivational speaker, said: 'We as people with visible differences face this discrimination time and time again. 'I went into this coffee shop and it was full people, mainly men, and they were all just staring at me, like they'd seen a ghost. 'The barista told me they weren't serving anymore, and then just turned and walked away. 'It was not a good feeling obviously - I felt neglected. 'It's not very inclusive, it's not acceptable to be subjected to that kind of behaviour. 'I was disheartened walking out that coffee shop. But I went to another one an hour later and they were really lovely.' Amit, from Birmingham, was born with the rare genetic condition that affects approximately one in 2,500 to 3,000 people worldwide. At the age of 11, Amit had his left eye surgically removed which led to him wearing an eye patch for six months while his prosthetic eye was built. Despite his disability, Amit gives talks in schools about his condition and has written a children's book called 'Born Different.' He said: 'A kid once said to me: "You don't need a Halloween mask, you've got one for life." 'That comment absolutely broke me, I still think about it every Halloween.' At the age of 11, Amit had his left eye surgically removed which led to him wearing an eye patch for six months while his prosthetic eye was built After learning to 'accept' his facial difference and with the support of his wife Piyali, 28, Amit started sharing his story online to help others. He has gained 300,000 followers across his social media platforms over the past two years, and even quit his job as a regional manager at a law firm to pursue a career as a motivational speaker, content creator. and a DEI (Diversity, Equity, and Inclusion) Business Partner. Amit added: 'People with visible differences are human beings. 'I want to help other people find validation and security in themselves.' FACT BOX TITLE Neurofibromatosis type 1 (NF1) is a genetic condition where tumours grow on the nerves and skin. NF1 is a lifelong condition that usually gets worse over time. It is caused by an altered gene and ometimes the altered gene is passed on to a child by one of their parents (inherited). But sometimes a child can be born with NF1 even if their parents do not have the altered gene. If you have NF1, there's a 1 in 2 (50%) chance of passing the affected gene on to any children you have. There's currently no cure, but treatment can help manage the symptoms. Symptoms of NF1 can include: Light brown patches of skin (café-au-lait spots) – these may be harder to see on brown and black skin Freckles in your armpits or around the tops of your legs lumps on or just under your skin (neurofibromas) that can be painful or itchy – these tend to appear during the teenage years or early 20s Yellow-brown raised dots on the coloured part of your eye (iris) that do not usually affect vision Eye problems, such as a squint, reduced vision, or a bulging eye (which can sometimes cause further symptoms like headaches or feeling and being sick) A large head and below average height Learning difficulties
Metro
19-05-2025
- Health
- Metro
Man claims cafe staff refused to serve him due to face tumours
A man with a rare genetic condition has said he was refused service in a cafe after customers stared at him like he was a 'ghost'. 35-year-old Amit Ghose has Neurofibromatosis Type 1, a condition which causes benign tumours to grow on his nerves. Last month, Amit had been visiting his sister Shilu Sen in Wood Green, London, when they went out for a coffee. When he entered a cafe, he says he noticed people were looking at him 'like they'd seen a ghost'. As Amit ordered a drink, he said he was told by the staff that they were 'no longer serving.' 'I went into this coffee shop and it was full of people, mainly men, and they were all just staring at me, like they'd seen a ghost,' he said. 'I went into this coffee shop and it was full of people, mainly men, and they were all just staring at me, like they'd seen a ghost. The barista told me they weren't serving anymore and then just turned and walked away. He added: 'It was not a good feeling, obviously – I felt neglected. It's not very inclusive, it's not acceptable to be subjected to that kind of behaviour.' Amit said he felt disheartened walking out of the shop, but later went to a separate shop, where the staff were 'lovely'. 'It's not all doom and gloom in the world, but it does happen,' he said. Amit, from Birmingham, was born with the rare genetic condition that affects approximately one in 2,500 to 3,000 people worldwide. At the age of 11, his left eye was surgically removed, which led him to wear an eye patch for six months while his prosthetic eye was built. Despite his disability, Amit gives talks in schools about his condition and has written a children's book called 'Born Different'. He said: 'A kid once said to me: 'You don't need a Halloween mask, you've got one for life.' That comment absolutely broke me, I still think about it every Halloween.' After learning to 'accept' his facial difference and with the support of his wife, Piyali, 28, Amit started sharing his story online to help others. He has gained 300,000 followers across his social media platforms over the past two years, and even quit his job as a regional manager at a law firm to pursue a career as a motivational speaker, content creator, and a DEI (Diversity, Equity, and Inclusion) Business Partner. 'People with visible differences are human beings. I want to help other people find validation and security in themselves,' he said. According to the NHS, NF1 is a condition people are born with, but symptoms can develop gradually over many years. The tumours are usually non-cancerous and benign, but can cause symptoms including neurofibromas, birthmarks, freckles in unusual places, or problems with bones, eyes and the nervous system. NF1 is caused by a faulty gene, and there's a 1 in 2 chance a child will develop NF1 if either the mother or father has it. There's currently no cure for the condition, but treatment can involve surgery, medicine to control secondary conditions, physiotherapy and pain management. Around 1 in 3,000 people have the condition, but Charmaine's case is extreme. If you or someone you know is affected by Neurofibromatosis visit for support and further information In 2022, another London cafe defended its decision to effectively bar a blind man with learning disabilities as his guide dog was 'too large and fluffy'. More Trending Staff at the Star Cafe in Sidcup, south-east London, repeatedly turned away Stephen Vallance, 44, his mum Ann and his Alsatian-Labrador cross, Wills, who is neither particularly large nor fluffy. He was told to either sit outside in the cold or leave, despite laws banning businesses from discriminating against guide dog owners. The charity Guide Dogs UK slammed the cafe's 'illegal' actions as 'unacceptable' and 'extremely disappointing'. Get in touch with our news team by emailing us at webnews@ For more stories like this, check our news page. MORE: Man, 26, dies after being stabbed during 'altercation' in north west London MORE: 'Knee knockers' are clogging the London Tube network and commuters are furious MORE: Restaurant tipping rules are quietly changing — and service charges could rise to 20%
Yahoo
18-05-2025
- Health
- Yahoo
'I was refused service in a cafe because of my face'
Subjected to brutal bullying as a child, Amit Ghose says he still has to deal with constant staring, pointing and comments, and has even been refused service in a cafe because of his face. The 35-year-old from Birmingham described how visiting an independent coffee shop in London recently "everyone was staring at me, and it was like they'd almost seen a ghost". "The person serving looked at me and said: 'Oh, we're not serving any more'. "She turned around and walked off. But clearly, clearly they were still serving." Amit was born with Neurofibromatosis type 1, a condition that causes non-cancerous tumours to grow along nerves. But after "learning acceptance" of his facial disfigurement he now shares his motivational story in schools with the aim of helping children "embrace their personalities and celebrate who they are". Another recent experience of abuse spurred him on to self publish a children's book, Born Different. "I had a couple of individuals come over to me in a park and ask me what happened to my face, and I thought they were just being curious," he said. "But actually they started laughing, giggling, saying: 'Oh my God, if I had a face like you I wouldn't even come out my house'." He said the encounter "really upset" him, "and I thought to myself, I need to do something about this. I need to get this book out. Now is the right time". "If I had this book when I was a young child, I think it would have helped me." Amit had his left eye surgically removed at the age of 11, leading to further facial disfigurement as well as abuse and bullying. In the run up to Halloween one year, a child at school told him "you don't need a Halloween mask, you've got one for life", he recalled. "That broke me to the point where I did not accept the left hand side of my face," he said. "For a very, very long time I hid the face, I just was not comfortable showing it to the world at all." Looking back, he said he had not understood the depth of depression and anxiety he experienced then. "Other children not wanting to come and sit next to me or hiding behind their parents all had a mental effect on me," he said. At school, cricket was his passion and it was through playing the game that he eventually made friends. "Cricket helped me become Amit, that boy who plays cricket, from Amit, the boy who has a funny face," he explained. But, he said, even as an adult he still experienced "constant staring". "The pointing, the tapping the friend next to them saying 'have you seen that guy's face', that is also constant," he said. "But there is kindness out there as well, and that needs highlighting." It was his wife Piyali who eventually taught him the "art of acceptance," he explained. "Really that I've got to accept myself before others can accept me," he added. She also persuaded him to start sharing his story on social media. "I thought TikTok was all about singing and dancing, and I thought maybe not, but she convinced me. "I created a video and I said to the world: 'I want to take you all on a journey to help and support and inspire you using my lived experiences.'" He started his account in early 2023, and has since gone on to gain almost 200,000 followers and millions of likes. "Me helping people on social media by sharing my story has helped me become more accepting of myself. "Now I say to the world, this is me, take it or leave it." At about the same time, he left his job at a law firm to take up motivational speaking full time. Helping young people felt so much more important, he said. He is also about to launch a podcast in which he speaks to others who have had similar experiences, including Oliver Bromley who was ejected from a restaurant because staff said he was "scaring the customers". "We're going to have lots of fun and inspire a lot of people," he said. "Disability or no disability, visible difference or no visible difference, we all have insecurities, we all have things that we're faced with, and challenges we're faced with. "I just want to give this narrative to people that if we truly celebrate who we are, accept who we are, fall in love with who we are, then we can be more confident." Follow BBC Birmingham on BBC Sounds, Facebook, X and Instagram. 'Restaurant ejected me due to my disfigurement' The secret I'm hiding under my baggy clothes 'You are the modern day Elephant Man' Amit Ghose TikTok Nerve Tumours UK
Yahoo
18-05-2025
- Health
- Yahoo
'I was refused service in a cafe because of my face'
Subjected to brutal bullying as a child, Amit Ghose says he still has to deal with constant staring, pointing and comments, and has even been refused service in a cafe because of his face. The 35-year-old from Birmingham described how visiting an independent coffee shop in London recently "everyone was staring at me, and it was like they'd almost seen a ghost". "The person serving looked at me and said: 'Oh, we're not serving any more'. "She turned around and walked off. But clearly, clearly they were still serving." Amit was born with Neurofibromatosis type 1, a condition that causes non-cancerous tumours to grow along nerves. But after "learning acceptance" of his facial disfigurement he now shares his motivational story in schools with the aim of helping children "embrace their personalities and celebrate who they are". Another recent experience of abuse spurred him on to self publish a children's book, Born Different. "I had a couple of individuals come over to me in a park and ask me what happened to my face, and I thought they were just being curious," he said. "But actually they started laughing, giggling, saying: 'Oh my God, if I had a face like you I wouldn't even come out my house'." He said the encounter "really upset" him, "and I thought to myself, I need to do something about this. I need to get this book out. Now is the right time". "If I had this book when I was a young child, I think it would have helped me." Amit had his left eye surgically removed at the age of 11, leading to further facial disfigurement as well as abuse and bullying. In the run up to Halloween one year, a child at school told him "you don't need a Halloween mask, you've got one for life", he recalled. "That broke me to the point where I did not accept the left hand side of my face," he said. "For a very, very long time I hid the face, I just was not comfortable showing it to the world at all." Looking back, he said he had not understood the depth of depression and anxiety he experienced then. "Other children not wanting to come and sit next to me or hiding behind their parents all had a mental effect on me," he said. At school, cricket was his passion and it was through playing the game that he eventually made friends. "Cricket helped me become Amit, that boy who plays cricket, from Amit, the boy who has a funny face," he explained. But, he said, even as an adult he still experienced "constant staring". "The pointing, the tapping the friend next to them saying 'have you seen that guy's face', that is also constant," he said. "But there is kindness out there as well, and that needs highlighting." It was his wife Piyali who eventually taught him the "art of acceptance," he explained. "Really that I've got to accept myself before others can accept me," he added. She also persuaded him to start sharing his story on social media. "I thought TikTok was all about singing and dancing, and I thought maybe not, but she convinced me. "I created a video and I said to the world: 'I want to take you all on a journey to help and support and inspire you using my lived experiences.'" He started his account in early 2023, and has since gone on to gain almost 200,000 followers and millions of likes. "Me helping people on social media by sharing my story has helped me become more accepting of myself. "Now I say to the world, this is me, take it or leave it." At about the same time, he left his job at a law firm to take up motivational speaking full time. Helping young people felt so much more important, he said. He is also about to launch a podcast in which he speaks to others who have had similar experiences, including Oliver Bromley who was ejected from a restaurant because staff said he was "scaring the customers". "We're going to have lots of fun and inspire a lot of people," he said. "Disability or no disability, visible difference or no visible difference, we all have insecurities, we all have things that we're faced with, and challenges we're faced with. "I just want to give this narrative to people that if we truly celebrate who we are, accept who we are, fall in love with who we are, then we can be more confident." Follow BBC Birmingham on BBC Sounds, Facebook, X and Instagram. 'Restaurant ejected me due to my disfigurement' The secret I'm hiding under my baggy clothes 'You are the modern day Elephant Man' Amit Ghose TikTok Nerve Tumours UK
BBC News
18-05-2025
- Health
- BBC News
Facial disfigurement: 'I was refused service in a cafe because of my face'
Subjected to brutal bullying as a child, Amit Ghose says he still has to deal with constant staring, pointing and comments, and has even been refused service in a cafe because of his face. The 35-year-old from Birmingham described how visiting an independent coffee shop in London recently "everyone was staring at me, and it was like they'd almost seen a ghost". "The person serving looked at me and said: 'Oh, we're not serving any more'."She turned around and walked off. But clearly, clearly they were still serving." Amit was born with Neurofibromatosis type 1, a condition that causes non-cancerous tumours to grow along after "learning acceptance" of his facial disfigurement he now shares his motivational story in schools with the aim of helping children "embrace their personalities and celebrate who they are". Another recent experience of abuse spurred him on to self publish a children's book, Born Different. "I had a couple of individuals come over to me in a park and ask me what happened to my face, and I thought they were just being curious," he said. "But actually they started laughing, giggling, saying: 'Oh my God, if I had a face like you I wouldn't even come out my house'."He said the encounter "really upset" him, "and I thought to myself, I need to do something about this. I need to get this book out. Now is the right time"."If I had this book when I was a young child, I think it would have helped me." Amit had his left eye surgically removed at the age of 11, leading to further facial disfigurement as well as abuse and the run up to Halloween one year, a child at school told him "you don't need a Halloween mask, you've got one for life", he recalled. "That broke me to the point where I did not accept the left hand side of my face," he said. "For a very, very long time I hid the face, I just was not comfortable showing it to the world at all." Looking back, he said he had not understood the depth of depression and anxiety he experienced then."Other children not wanting to come and sit next to me or hiding behind their parents all had a mental effect on me," he said. At school, cricket was his passion and it was through playing the game that he eventually made friends. "Cricket helped me become Amit, that boy who plays cricket, from Amit, the boy who has a funny face," he explained. But, he said, even as an adult he still experienced "constant staring"."The pointing, the tapping the friend next to them saying 'have you seen that guy's face', that is also constant," he said. "But there is kindness out there as well, and that needs highlighting." 'This is me, take it or leave it' It was his wife Piyali who eventually taught him the "art of acceptance," he explained. "Really that I've got to accept myself before others can accept me," he added. She also persuaded him to start sharing his story on social media. "I thought TikTok was all about singing and dancing, and I thought maybe not, but she convinced me. "I created a video and I said to the world: 'I want to take you all on a journey to help and support and inspire you using my lived experiences.'"He started his account in early 2023, and has since gone on to gain almost 200,000 followers and millions of likes. "Me helping people on social media by sharing my story has helped me become more accepting of myself. "Now I say to the world, this is me, take it or leave it." At about the same time, he left his job at a law firm to take up motivational speaking full time. Helping young people felt so much more important, he said. He is also about to launch a podcast in which he speaks to others who have had similar experiences, including Oliver Bromley who was ejected from a restaurant because staff said he was "scaring the customers"."We're going to have lots of fun and inspire a lot of people," he said. "Disability or no disability, visible difference or no visible difference, we all have insecurities, we all have things that we're faced with, and challenges we're faced with."I just want to give this narrative to people that if we truly celebrate who we are, accept who we are, fall in love with who we are, then we can be more confident." Follow BBC Birmingham on BBC Sounds, Facebook, X and Instagram.
