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Grace’s Story

24 January 2018

My name is Grace (pictured right), I was born 30/12/1995.

When I was born I wasn’t born with Neurofibromatosis.

When I was around three to four years old my mom started noticing some marks on my stomach, she took me to my GP where I was sent to the hospital where they had a further look at them.

I was told I had Neurofibromatosis Type 1 (NF1).

I had to go to the hospital every year for a check-up, I did not think anything of it because I was so young. As I started to get older I noticed that other children didn’t have the same marks as I had. I questioned my parents, "why I was different and why was it me who had this condition and nobody else in my family did"?

When I was 15 I was discharged from the hospital and I was told I am a carrier, we have no idea where it has come from because none of my family has it. I was told in the future my children may get it but they may not. As I’ve got older some of the marks have started to fade. But will never go for good.

I used to be so insecure, I did not like having my body on show and I refused to be in a bikini on holiday. I remember one year a woman just stared at my stomach, at the time I was so young I did not question why she was staring.

As I got older I learnt to deal with it, going through school people would call me names because I had a lot of freckles on my neck. I did not take any notice of the bullying because freckles are a sign of beauty.

"I am now 22, and I absolutely love my body. I embrace my marks and people never ever question me about it. "

– Grace

I am now working for Thomas Cook airlines as cabin crew, living a healthy lifestyle and I couldn’t be happier.

I think anybody that has an insecurity I would try and tell them to embrace it because nobody is perfect and everybody has there own faults and flaws!

I am just a normal 22-year-old enjoying my life I don't even notice most of the time I have NF. I will honestly sometimes forget that I have NF. I have olive skin, and I sometimes fake tan when I go out with friends so you can’t even see the marks.


DISCLAIMER: Due to Neurfibromatosis' dominant qualities it is not possible to be a "carrier" of NF1 you either express the condition or you don't carry the gene. This also means that Grace was not born without NF1 but simply the fact that she was born without any noticeable symptoms until a later age.