My daughter has Alopecia.

My daughter was diagnosed with alopecia 20 years ago.

She’d visited a friend in Queensland for the school holidays and the mother called to say she noticed spots of baldness on her head. It happened quickly as they were not there when she’d left home. I asked what shampoo was it as it was noticed hair washing. I thought it’s the brand. 

Over the next weeks the morning ponytail brushing revealed hair loss and when we went to our hairdresser, she mentioned it. 

This was a completely different recollection for me and my daughter.

I made a doctor’s appointment and we were referred to a dermatologist but had to wait months. They suggested a lotion that didn’t end up working. 

I felt useless and frustrated because our only option was the cancer clinic wig loan service, so that’s where we went next.

We found a wig that was suitable for an older person, but when we got home my daughter threw it across the room. It was never used. 

We found a Hip Hat and she wore that with a bandana, even up to her transition to high school. We had to notify all teachers that she was out of uniform due to a medical condition but often it was not considered. She was asked to remove her bandana and most of the time they weren’t kind about it. 

At about 14 my daughter decided on a wig. It meant shaving what hair was left to create a perfect one for her head. I felt enormous grief.

She has had a suction wig since then.

But since then there has been additional hair loss that’s been emotional and a financial challenge.

I’m grateful she’s found acceptance and love in her life. She’s empowered to share her experience and educate others. 

Right now, I think 20 years on were all in a good place. The confidence and beauty in my daughter inside and out just makes me proud.

If I could share a message for others it would be… 

If you are just starting this journey with your child I feel it’s easier now as there is so much more information and research. It’s important to consider the impact on siblings as they’re asked why does your sister/brother look like that. I talked to our daughter’s class. I hope we respected her wishes.

I had worked at DFAT and I was not allowed for head coverings other than religious reasons to use for a passport photo. I reached out to a former colleague that had alopecia and with his help my daughter’s passport photo was approved. It was situations like this that are an example of change that is now accepted. We were the first family to ask for an exemption for a different headcover due to a medical condition.

Quick message for the children reading…

Tell your parents/carer if you’re not comfortable with decisions other people are making for you. Speak up if you can.

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