Corinne’s Alopecia Story.

My name is Corinne Scullie, I am 37 years old and I am currently suffering from Alopecia Universalis.

My journey with alopecia began when I was in primary school and I started losing patches of my hair. Alopecia was something my mum already had experienced herself so we knew what it was straight away. I recall trying different things at the time to try and help but eventually it all fell out. The biggest thing I remember about this time was that most people assumed I had cancer and that not many people knew what alopecia was.

At school I was allowed to wear whatever hats I wanted inside the classroom as well as outside and I thought this was awesome because everyone else had to wear the dorky school hats. During this time, I continued to play Netball and participated in Calisthenics. My hair grew back quite quickly and over this period I never wore any wigs.

Since then I would get the occasional patch over the years but it wasn’t until 2014 that it really started to disappear again. This time, I lost all my hair and eventually my eyebrows, eyelashes and body hair disappeared too. Because alopecia was something I had grown up with (my mum continued to have it come and go over the years and one of my younger sisters also lost her hair) I found it a lot easier to accept than most.

I started buying wigs and named my first one ‘Big Red’ (because it was a long red wig) and we had a lot of fun together. I have never shied away from the fact that I have alopecia but once my kids got to a certain age, I had to begin to factor in their comfort levels as well as my own. Slowly, their friends became aware. My son, in particular, found it funny to pull my wig off and say “my Mum’s bald!”.

Given I have a bit of a collection of different wigs, it also has become fun for kids (and sometimes the adults) to try them on. When explaining to younger kids I often say I have magic hair that can come off and go back on – sometimes it changes colour too. Its quite funny to then see them try and take their hair off too.

After several years of attending my daughter’s calisthenics competitions and concerts I started to want to get involved again myself. She was around 6 at this time and wasn’t keen for me to join and I think part of this was the fact that I would be on stage in front of people without hair. I gave her another year before raising the subject again and she was not thrilled, but my husband made her come around to the idea.

Joining the Masters team of Bendigo Calisthenics Club has been the best for my self-confidence. I have made new friends and helped spread some awareness within the club about Alopecia. Receiving this funding grant has allowed me to continue this year and will also give me a platform to spread further awareness throughout the calisthenics community.

Thanks to the Australian Alopecia Areata Foundation (AAAF), for funding my return to Calisthenics and for helping me spread awareness about Alopecia!

Emma’s Alopecia Story.

My name is Kylie and I am Emma’s Mum. Emma was diagnosed with Alopecia during the first lockdown in SA, in March 2019.

It all started with some of Emma’s hair on her head falling out in big patches.  Then it slowly progressed to her eyebrows, eyelashes, and all of her hair on her head, arms and legs.

We had trouble getting Emma into seeing a specialist and dermatologist at the time of the hair loss due to the COVID 19 outbreak and many doctors were not taking patients from the Barossa which is where we live, due to the cluster in Tanunda (the tourists from the American Cruise Ship).

When Emma returned to school after the COVID lockdown, she had lost a lot of her hair and wanted to wear a hat to school.  I emailed all of Emma’s school friends to advise them of the situation and to let them know Emma may look a bit different and all her friends wore a hat or beanie to Emma’s first day back at school.

Emma is a resilient and strong girl and has handled what life has thrown at her health wise with strength and dignity.  She amazes me every day and I feel privileged to be her Mum.

The funding we have received from the foundation has been amazing and has helped Emma continue her passion for Gymnastics.   This activity gives her so much confidence and he shas progressed to the Performance Team in her gymnastics group and continues to improve and practices daily at home.

We would like to thank the Australian Alopecia Areata Foundation (AAAF) for helping and sponsoring Emma 😊

My Alopecia Journey – Kerri

Kerri was one of the recipients of the AAAF Sponsorship program which ran in 2019 and early 2020. She is a talented artist who put together a special exhibition about her journey with this condition titled Understanding Alopecia.

I went through a very stressful time 6 months before my hair started falling out, I never thought anything of it and kept on with life as you do. I did have a bit of hair loss, but I never really took much notice until I went to get my hair cut one day and the hair dresser told me she had found two round patches on the back of my head about the size of a twenty and ten cent piece. She suggested that I go to the doctor and said it could be alopecia, I had never heard of Alopecia before so this started a strong relationship with google researching Alopecia. This period of time was the worse as I didn’t really know what was wrong with me, the unknown and thinking it could be something worse was worrying.

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Alopecia and the New School Year

Happy new year! A new school year is just around the corner. Many families will be prepping for the usual concerns – being sure to have the right books, enough pens, and shoes sturdy enough to (hopefully) make it through the whole year.

For families living with alopecia, the new school year can have some extra considerations. Whether you’ve had alopecia for years, or have experienced hair loss over the holidays; whether you’re heading into a new year at the same school or have made a big transition, we hope this article can be a helpful guide. The new school year doesn’t have to be stressful, and there is a lot you can do to set up for a good term.

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Wigs – Where to start?

Choosing the right wig for you is a very personal decision. If you’ve never shopped for wigs before, it can also be overwhelming or stressful. But it doesn’t need to be. This guide is here to help you understand your options before you get stared.

Questions to Consider

Which wig will be best for you depends on your lifestyle and your preferences. We recommend doing some research and deciding what your priorities are before you get started. Here are some questions to think about:

  • What’s your budget? Costs of wigs can be very varied.
  • How soon do you want or need your new wig? Custom wigs are made to order, and therefore take more time to make. Some can take well over a year, so understand what to expect and what you need.
  • Do you need your hairpiece to stay on during sport or physical activity?
  • Do you want one style that you stick with for a long time, or would you rather mix and match your look?
  • Are you able to take care of the hairpiece? Kids are especially prone to bring rough on their wigs, which can shorten the lifespan of the wig. Factor this into your budgetary decisions.
  • Do you want to sleep in your wig? Sleeping in wigs can shorten their lifespan, so it’s not usually recommend. If you feel you need to sleep in a wig, be aware that it may need replacing much sooner, and factor that replacement cost into your budget.
  • Is it really hot or humid where you live? Some styles of wig breathe more than others, and shorter hair styles can feel lighter on your neck.
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Alopecia and Representation

The new production of Roald Dahl’s The Witches has sparked conversation and controversy with it’s depiction of the Grand High Witch, played by Anne Hathaway.

(Spoilers ahead for those who haven’t read The Witches or seen the film yet)

One memorable scene in Dahl’s original novel includes the main character overhearing the evil plots of the titular Witches. The scene is tense and sinister, as our main character hides in a cupboard and hears the plans while trying not to be discovered. Classic rising tension. As part of the reveal of these terrifying villains, they shed their normal human disguises to show cat-like claws and itchy bald heads.

Sigh.

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Ten Years In

Happy Alopecia Areata Awareness Week! AAAF is so excited to be celebrating our tenth Awareness Week with this amazing community.

This year has brought a lot of reflection and introspection. For AAAF, celebrating our tenth birthday has been very different to how we envisioned. We’ve changed plans, boosted our remote and online support, and had to pause many of our usual events and fundraising activities. Many states have been lucky enough to be able to celebrate Alopecia Areata Awareness Week in person, while others have joined remotely.

These changes, coupled with our tenth birthday, have really brought home how much has changed for AAAF and for our amazing community since we started.

When AAAF first began, the most common question we were asked was “Am I the only person with this condition?”. We consider it one of the greatest signs of success that we no longer hear this.

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A letter to my alopecia family

Submitted by Siarrah – You can read more about Siarrah’s journey with Alopecia Areata here.

My Alopecia journey in the last year:

Through the AAAF sponsorship program I set myself a goal to create awareness within my netball community.

I forget that I’m wearing a bandana; I forget that others might wonder why.

With the sponsorship program I found myself committed to creating awareness.

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Art and Alopecia

Creative practices like art, music, writing and dance have long been known to help support mental health. Arts therapy is a recognized practice with many potential benefits, known to help with communication, self-image, personal development and coping skills.

Throughout the challenges 2020, we’ve seen how arts and creative practices have been very helpful for individuals and families. A range of creative practices have seen a swell in popularity, from mindful colouring, paint-by-numbers for adults and learning viral online dances. Art, dance and music can be great learning tools for young kids and an opportunity for self-expression or exploring emotions for teens and adults.

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Alopecia Video Resources

AAAF have a huge range of information and resources available on our website, including latest research updates, support material, and our biannual newsletter. This blog is also home to some fantastic tips, tricks and techniques to help you on your alopecia journey under our “Advice” tab.

But did you know that AAAF have a YouTube channel with hours of video resources all about living with a form of Alopecia Areata? Whether you’re looking for a super quick animated explanation of how Alopecia Areata works, a detailed makeup tutorial, or discussion of how to tell your friends about the condition, we have great video resources that can help.

We’ve collected some of the most popular videos to share with you here. What kinds of videos would you like to see us do next? let us know in the comments!

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