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Arooj: The Fashion Blogger with NF

21 August 2019

Fashioning Your Own Path

Arooj Aftab, 22, is a social media co-ordinator for a modelling agency. She is also making quite a name for herself in her own right in socialmedia, as an Instagram influencer (@vogue_wonders) and as a style blogger at Vogue Wonders ( She has been Shortlisted for Best Newcomer at the Cosmopolitan Influencer Awards 2018.
Here she talks about her life, NF1, and her hopes for the future.

“I was diagnosed withNeurofibromatosis as a child, but I didn’t know what it meant when I was younger. It wasn’t until I was about 16 that I really understood it. I knew I had these birthmarks and lumps on my stomach, which grew and grew as I got older. My NF1 causes a lot of pain – it really hurts if I’m touched in the sensitive area. When I was a
younger child, I used to cry and cry. I used to scream in pain if I got hit, or someone grabbed me. It meant that I’ve always had to avoid contact
sports, for example.

Sometimes it affects the way I work – it’s very hard to concentrate when I’m in pain. Working in fashion and being an online influencer on Instagram, I’m always constantly
having to think what I can and can’t wear. I won’t ever wear fitted items of clothing as I feel it shows my NF – my left side has significant disfigurement, as well
as discolouration.

That’s how I became interestd in wearing menswear as a fashion choice. That developed into a blog, and it’s really started to take off. This week, I revealed to my Instagram followers that I have NF, and showed them where my NF is. Highlighting that was important as people got to see more of me and I want to be authentic as I can across social media. I’m currently working with the BBC who are making a documentary all about my journey. I hope it can inspire other young people with NF and other conditions.

I have so much I want to do, so my goals are always the first thing. As much as it affects me, I can’t let NF stop doing what I love. I want to change my life for the better and also help other people along the way. Locking yourself away can’t change anything. Getting up and carrying on and doing can change your life. Be open, and talk. Don’t be afraid, embrace what you have and be you. I would just say to anyone with NF: be proud of who you are.”

Arooj Aftab, 22, is an influencer who is known for her baggy fashion style.

But what her 7,500 Instagram followers don't know is there's a big reason she chooses to wear oversized clothes - which she has kept secret until now.


"I decided that I should embrace my NF"

"... and share the fact I had the condition in an Instagram story. I was absolutely terrified revealing something I'd kept secret for so long."
- Arooj


"Although I've revealed my condition to my followers I don't know if I'm at the stage where I want to constantly show it with fitted clothes.

But I do feel like people understand why I wear baggy clothes now and I feel like much more of a real person online."

– - Arooj

Nerve Tumours UK is delighted to have been able to support Arooj and BBC Newsbeat to feature Neurofibromatosis. 

Our Lead Neurofibromatosis Specialist , Carolyn Smyth appears in the documentary advising Arooj on her NF1.