25 May 2013

Ichthyosis Awareness Month: Angela's story ~ "she's learning to be comfortable in uncomfortable skin."

Angela is a little girl who has both a visible birthmark and Ichthyosis. Her mum, Kimberly, writes of Angela's difficult experiences of being teased, and then the growth in her self care and confidence after receiving counselling and attending a dermatology camp. Kimberly's message is so important - emotional support is crucial to managing Ichthyosis - it's just as important as seeing our dermatologists. Kimberly blogs here.


"At first glance, Angela looks like any other ten year old. Yet if you look closely, there is a dusting of white on her skin. Then, as she brushes hair away from her face, the birthmark is uncovered. That’s when people stare or look away. If you ask about her skin, she simply says, “I forget my birthmark is even there. It doesn’t bother me. My skin condition is dry and uncomfortable.”

The diagnosis was almost accidental. During a routine appointment with a new Dermatologist, I ran my hand across the back of Angela’s neck. Flakes drifted down and I realized she was shedding! The doctor looked at her back, diagnosed Ichthyosis Vulgaris, and prescribed a new lotion. Thankful for a diagnosis I searched the internet for information. My computer screen filled with pictures that made my heart sink. We were already dealing with a Nevus (birthmark) I didn’t want to deal with anything else! Turning off the computer, I resolved not to search anymore.

Her skin improved, then the lotion battle began. After a few weeks without a skin care routine, I coaxed her into letting me apply her special lotion. It burned her skin. She ran around in circles screaming and crying. I grabbed a towel and scrubbed trying to get the lotion off. I held her tight as we both cried. I realized I needed answers. Turning to the internet again, I found the FIRST website - and answers. Discovering her level of IV wasn’t very severe, relief and gratitude overwhelmed me.

At this point, Angela was increasingly uncomfortable at school and teased constantly. With her emotional health deteriorating, we withdrew her. Finally, I sat with the dermatologist and discussed the emotional implications of Angela’s skin. The doctor became my hero that day. She patiently listened and provided lists of outside agencies to help and possible counseling if needed. Angela thrived again through homeschooling and a time of healing began.

The year came when Angela was old enough to attend Camp Discovery. Worried we would miss the deadline, the doctor’s office drove the needed paperwork to our house - once again, our Dermatologist saved the day! Camp brought many lessons for all of us. It changed Angela’s outlook. Not only did she take her skin care routine seriously with a positive attitude, she stopped hiding.

Since camp, Angela has enjoyed cheerleading and even acting! I’ll never forget the day a special needs child would not stop asking Angela what was on her face. She called her “monkey face” and kept touching her. I walked over to intervene. Angela looked at me and boldly said, “It’s ok, she just doesn’t understand. And mom, I can handle it”

You know, I said her doctor became a hero to me. Truth is - the real hero is Angela. The little girl, who at age seven shut down at school because of the teasing, now is the little girl, who when being teased, doesn’t back down, but shows love.

As her mom, it’s my job to help her learn to be comfortable in uncomfortable skin. It’s not easy. It takes community, doctors, and research. But most of all it takes prayer, acceptance, love, and embracing what makes her a hero."

If you are suffering from depression or anxiety and need to talk to someone, contact

Lifeline - phone 13 11 14

Beyond Blue - phone 1300 22 4636

Kids Helpline - phone 1800 55 1800

This post is part of the Ichthyosis Awareness Month project. For all posts in this project, click here.

For Ichthyosis and appearance diversity resources, click here.


1 comment:

  1. Angela, you are a hero! And a ballerina, too. I'm wishing you all the best as you grow into an awesome young woman like Carly.


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