Tuesday 30 October 2018

Ichthyosis & Halloween…

Once upon a time one Halloween… Tina, Mui and I walked through Kowloon. A woman recoiled on seeing Mui, then laughed... then stared... then screamed and screamed. The woman had mistaken Mui’s face for a mask… then realised it wasn't. 
Mui ran off in streams of tears.
Such screaming happened weekly if not daily on occasion. As parents, we dealt with it each time with Mui at home. Each time we talked it through, came up with answers and solutions, discussed it honestly and openly till Mui was comfortable. 

Mui still has difficulties coming to terms with her skin condition. She’s gone through years of (very loud!) denial of all things Ichthyosis. She isn’t as vigilant with her skin care routine as she should be.

People still send hate: “The b*tch is a f*cking ghoul… face it.”
People still say: “Just ignore it!” though wouldn’t if it were racially motivated hate. 
Too many turn their heads and look away.

In school one of Mui’s friends once piped up: “Mui won’t need a mask for Halloween!”

As parents we asked the teachers to consider a soft discussion of the young girl’s choice of words. We offered to come in to school and present a relaxed talk, though the offer was declined.
These days Mui handles Halloween differently. Her choice.
MUI says: “Everyone goes all out and splashes out on Halloween stuff and costumes. Thankfully I have a cheaper alternative! (Mui's photo pointing to her own face) I am deadly serious. There is an upside to Ichthyosis! This is meant to be a funny post!”
Dealing with Ichthyosis and Halloween remains each individual’s choice.

We’d love to hear your thoughts.
To help our story help other parents and children come to terms with their choices, simply “share” and “like” our Facebook page: https://www.facebook.com/GirlBehindTheFace

For more on our story please visit our new website: https://www.thegirlbehindtheface.com

Thanks. Tina, Mui & me (Rog)

Monday 29 October 2018

This Blog first appeared on: The Girl Behind The Face

I'm out of hospital after 11 days on IV antibiotics. For a few days Tina was terrified. She was there for me day and night... as she was, aged 26, for Mui during Mui’s early years of endless hospitalisations. Tina is one amazing woman.

Mui’s psychiatrist says Mui processes empathy “differently”. Nevertheless, Mui has many great qualities. And she is never still! 

MUI says: “I took part in a fitness challenge called Project Change 2018 this summer. A 6 week body transformation challenge. For me, it was never about losing or gaining weight. I yo-yoed on the scales. Didn’t care. I won the challenge in a three way tie.

Every contestant was told to pick a charity. 

Once, I didn’t want anything to do with Ichthyosis. But because of our platform, The Girl Behind The Face, I was able to confront the fact that I have HI. I have been taught by my parents to give everything a go. I wanted to show people that no matter your limitations, don’t let that stop you from doing your thing.”

TINA says: As The Girl Behind The Face, the three of us have raised HK$36,515 for Ichthyosis related causes. Mui’s Project Change win means US$243 for the Foundation for Ichthyosis & Related Skin Types.

Here’s a video of Mui’s Project Challenge:

To help our story help other parents and children simply “share” and “like” our Facebook page.

For more on our story and future charity challenges, please visit our new website: https://www.thegirlbehindtheface.com  

Thanks Rog