My tumours are not 'contagious' - born different
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Date: 2023-09-12
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Comments and reviews: 16
Starlette
It's not that she doesn't feel beautiful! It's the feeling of insecurity and self-consciousness. I have NF too and I hate it and I still do not feel confident and feel insecure. I am sorry but when people say -you are beautiful-, -who cares what others think- etc. Most of those comments are from people (yes family and friends) who do not suffer from NF or any disorder. They come from a good place, I understand, however it is just putting a band-aid on the situation and on their feelings and just putting it aside. Learn to have empathy and instead of saying -you are beautiful and who cares about haters-. How about hearing what they said about their feelings and really try and understand that. Because think about it, how do you think a person feels with these tumours all over? So say something real, like -I can't understand what it feels like to have these tumours all over your body and it being progressive. It must feel uncomfortable and I am sorry you are feeling this way-. and keep asking more about what they are going through and learning more about the disorder. Sometimes, they just want you to know it -#-$%--# to have this. I got breast cancer because of this and went through treatment in 2016. It was hard and I am thank goodness still in remission.
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It's not that she doesn't feel beautiful! It's the feeling of insecurity and self-consciousness. I have NF too and I hate it and I still do not feel confident and feel insecure. I am sorry but when people say -you are beautiful-, -who cares what others think- etc. Most of those comments are from people (yes family and friends) who do not suffer from NF or any disorder. They come from a good place, I understand, however it is just putting a band-aid on the situation and on their feelings and just putting it aside. Learn to have empathy and instead of saying -you are beautiful and who cares about haters-. How about hearing what they said about their feelings and really try and understand that. Because think about it, how do you think a person feels with these tumours all over? So say something real, like -I can't understand what it feels like to have these tumours all over your body and it being progressive. It must feel uncomfortable and I am sorry you are feeling this way-. and keep asking more about what they are going through and learning more about the disorder. Sometimes, they just want you to know it -#-$%--# to have this. I got breast cancer because of this and went through treatment in 2016. It was hard and I am thank goodness still in remission.
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Dani
I have NF and it sucks i had 3 appt today at BC hospital and they have done so much to make sure your not in pain and you are happy in kids it-s like 1 in 3500 births so it is rare I-ve been fighting this condition for 14 years she so inspiring for me cause I don-t have it as searious and all people with NF are idols to me and it-s hard to me when people bully other kids or adults with NF because I-ve got bullied for it so if anybody out there that has NF don-t let the comments get to you they don-t know what we go through
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I have NF and it sucks i had 3 appt today at BC hospital and they have done so much to make sure your not in pain and you are happy in kids it-s like 1 in 3500 births so it is rare I-ve been fighting this condition for 14 years she so inspiring for me cause I don-t have it as searious and all people with NF are idols to me and it-s hard to me when people bully other kids or adults with NF because I-ve got bullied for it so if anybody out there that has NF don-t let the comments get to you they don-t know what we go through
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Gymnastlover1616
I have this and I agree with everything she has said. I don-t have tumors yet and I have one on my head and I-m terrified it-s going to turn to cancer. I don-t have it as bad as some people who may have it but it affects learning, height, etc. and my dad cancer twice and the second time he got nf cancer perfrial sheif nerve tumor idk how to spell it but it-s very very rare
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I have this and I agree with everything she has said. I don-t have tumors yet and I have one on my head and I-m terrified it-s going to turn to cancer. I don-t have it as bad as some people who may have it but it affects learning, height, etc. and my dad cancer twice and the second time he got nf cancer perfrial sheif nerve tumor idk how to spell it but it-s very very rare
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blogs
My cousin had this. She passed away during a 7 minute long cosmetic surgery to remove a mole from her neck. Please just love yourself the way you are and don-t go under the knife unless it-s necessary or unless you know and really accept all the risks, no matter how small.
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My cousin had this. She passed away during a 7 minute long cosmetic surgery to remove a mole from her neck. Please just love yourself the way you are and don-t go under the knife unless it-s necessary or unless you know and really accept all the risks, no matter how small.
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Spooky
Everyone has something, nobody really truly understands unless they have a noticeable condition. If your not living in pain, that helps. I'm thinking you have suffered a long time. I'll pray for you to stay focused and strong. You do the same.
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Everyone has something, nobody really truly understands unless they have a noticeable condition. If your not living in pain, that helps. I'm thinking you have suffered a long time. I'll pray for you to stay focused and strong. You do the same.
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Izzy
One thing to add based on the description, Neurofibromatosis is a genetic disorder of the nervous system. Not a skin condition, it can however affect the skin but its classified as a genetic disorder of the nervous system.
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One thing to add based on the description, Neurofibromatosis is a genetic disorder of the nervous system. Not a skin condition, it can however affect the skin but its classified as a genetic disorder of the nervous system.
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Rodney
The best way to counter ignorance is to educate the ignorant but there will always those who refuse to be educated. She is not ugly and she has four beautiful children which is better than most people.
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The best way to counter ignorance is to educate the ignorant but there will always those who refuse to be educated. She is not ugly and she has four beautiful children which is better than most people.
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Novelette
Keep building your confidence and keep loving yourself, you did not cause this condition to occur. we ought to love each for it could have been anyone of us
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Keep building your confidence and keep loving yourself, you did not cause this condition to occur. we ought to love each for it could have been anyone of us
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Tay
We can't control what may happen to us, so it's best to not judge or make fun because you never know you may get something far worst than this! Peace and love.
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We can't control what may happen to us, so it's best to not judge or make fun because you never know you may get something far worst than this! Peace and love.
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Amnesi
Beautiful -- I also have a skin condition and its sometimes hard when women always talk about skin on the internet but life is a Gift lets Enjoy it--
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Beautiful -- I also have a skin condition and its sometimes hard when women always talk about skin on the internet but life is a Gift lets Enjoy it--
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Tara
Bless her- what a strong brave beautiful woman. She is inspirational. So glad she has a loving family. This is a terrible condition.
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Bless her- what a strong brave beautiful woman. She is inspirational. So glad she has a loving family. This is a terrible condition.
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Parker
I also have NF1. I remember a hair stylist would not cut my hair because she thought I was contagious. I walked out crying.
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I also have NF1. I remember a hair stylist would not cut my hair because she thought I was contagious. I walked out crying.
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SANDMAN
Do some research on this lady. She-s lookin for a pity party. Was told not to have kids. She-s got 4. Just do research.
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Do some research on this lady. She-s lookin for a pity party. Was told not to have kids. She-s got 4. Just do research.
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Polina
Well yeah, the bumps are noticible, but it doesn't matter. The only ugly ones are the racists and other bad people.
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Well yeah, the bumps are noticible, but it doesn't matter. The only ugly ones are the racists and other bad people.
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Riot
My husband, mother in law, and neighbor all have this. And they are all wonderful people. I love my husbands body.
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My husband, mother in law, and neighbor all have this. And they are all wonderful people. I love my husbands body.
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Olivia
You are a beautiful strong woman in my eyes-. Don-t let nothing stop you, stares, smirks you are a strong woman!
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You are a beautiful strong woman in my eyes-. Don-t let nothing stop you, stares, smirks you are a strong woman!
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