Rare Disease Day - 28th February 2015

Yulianna Yussef


Jodi Whitehouse & Yulianna Yussef

Yulianna Yussef is internationally recognised for raising global positive awareness of CMN through her large social media following on Facebook and Instagram.  Caring Matters Now trustees are thrilled to have Yulianna partner with the charity through supporting the ‘HOW DO YOU C ME NOW?‘ exhibition series.

Growing up Yulianna was a happy and carefree child – not paying much attention to her CMN. “I remember looking at my skin in the mirror without any particular emotions.”

From the age of 8 years, Yulianna started to notice that all eyes were on her, with people pointing at her legs and saying unkind words; she was being bullied.  She subsequently discovered that her mother and nanny had been protecting her from unpleasant situations throughout her childhood. Yulianna tells of one example when a group of parents didn’t want Yulianna to play with their children as they thought she was contagious!

Growing up Yulianna believes the most important thing her mother did was to never pay attention to her CMN or treat her differently.  Yulianna says “My mother never said things like ‘you are normal’, ‘you’re like everyone else’, ‘your skin is unique’.  I believe that’s why I never really paid much attention to my birthmark until I was about 8 years old.”

Yulianna’s mother found doctors that would carry out surgery on Yulianna to remove her CMN, but this came at a great financial expense.  Yulianna recalls her mother asking her if she wanted surgery but Yulianna always declined, thinking “I don’t want to – I’m good with my skin”.

The hardest time for Yulianna was going through her teenage years.  Yulianna started questioning “why me?”, “why do I deserve this?”.  Yulianna believed that nobody would ever love a girl with an all-black and hairy back.  She thought that boys would never choose her because they had the choice to pick a “normal girl” with perfect skin.

Yulianna remembers one particularly difficult day when she was 15 years old.  Yulianna spent the day at the beach with her friend and during the day, she received many insensitive comments, amongst the usual stares and glares.  One of the comments came from an older woman who approached Yulianna and started to advise her on how to remove her ‘warts’, as she called them.  It was a day full of insensitive comments, resulting with her friend commenting that walking with Yulianna was just like walking with a monkey.  Yulianna says, “I know what my friend said was just words and meant as a joke. I wasn’t angry at her, but after this I began to just sit at home all summer and only went out in the evenings when it was dark.”

Some years later, a positive experience came when Yulianna was traveling.  One hot sunny day at the age of 18 years, Yulianna gained the confidence to wear a pair of shorts.  Whilst waiting to rent a scooter, Yulianna noticed a lady staring at her legs.  Yulianna thought initially the lady was staring at her CMN and started to feel very self-conscious.  The lady then spoke to Yulianna and complemented her turtle tattoo which is situated on her left-leg.    Yulianna was amazed that the lady had noticed her tattoo more than her CMN!  Yulianna says “The lady was a kind person and it was the first time that I started to think that maybe not everyone is staring at me because of my CMN.”  It was at this point when Yulianna started to work on building up her self-confidence by controlling her thinking and retraining her mind-set.   

Looking back, Yulianna credits her body confidence to tiredness.  Yulianna expresses she was tired of hiding and being afraid of people, their reactions and actions. “I felt weakness and had pity on myself.  It was only then that I realised I needed to work on building up my own confidence.  It was my mind I had to learn to control.  I knew I wanted to be happy, healthy, feel beautiful and confident in my own skin and I am now. But it’s been a long journey to reach this point.”

Surrounding herself with the right people and now feeling strong and confident, Yulianna rarely receives negative comments.  Any negative comments received, mainly comes through social media.  Yulianna says, “It’s easy to write something ugly rather than tell it to your eyes.  Nobody can offend you when you feel strong and confident.”

Yulianna is delighted to be involved in the Caring Matters Now ‘HOW DO YOU C ME NOW?‘ exhibition series.  Yulianna expresses she is excited by the positive impact the series will have not only on those affected by CMN but also on the general public’s perception of CMN.

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