Hayley Anderson’s Alopecia Story.

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My name is Hayley. I am 11 years old and I was diagnosed with Alopecia Areata when I was 5 years old. Initially, my hair started falling out in circle patches, when 3 months had passed I was totally bald and had lost all body hair. The treatments offered were invasive or had side effects on my body so my mum helped me embrace having Alopecia. People in my community get confused when they do not know me, they think I have cancer and it confuses them as I look healthy and well. Mum has helped me figure out how to talk to people about alopecia and we role-play scenarios to help when people stare or make inappropriate comments. 

At first, I felt nervous and scared because I was not sure what was happening to me or why. It would burn and itch when the hairs fell out and it would sting a lot. When my mum kissed me on the head and reassured me, I knew I was loved and everything was going to be ok. Mum always encourages me to continue to do the activities that bring me joy. One of these is dancing.

People often made comments to me like, “how come you didn’t tell me you were sick with cancer?” or “why would your mum shave your head like that?” “are you dying because you have no hair?” “Kids would call me butt-head and leave me out because they thought they would catch it. People didn’t know what to think or say.

One time a prep student thought I was a boy when I went to the girl’s toilet, she said “boys aren’t allowed in here”. I giggled at this as I understood she didn’t understand.

Mum got me connected with the AAAF foundation, we attended awareness days at the Melbourne Zoo, Gumbyaworld, and Anglesea Camp 2021.  

In 2017 I got to do a special photoshoot to raise awareness, I was allowed to bring my alopecia friend who I met at Melbourne Zoo with me. Her name was Aria. We had so much fun dancing in the fairy dresses.

I have tried different types of wigs. My favorite is the suction Wig. I was very lucky to have the help of a variety of kids who got me one made through angel wigs in Melbourne. I can dance, do cartwheels and flip on the monkey bars and it doesn’t fall off. It’s legit epic! When I wear my wig It feels weird at the start but when you get used to it you feel like wearing it every day. I chose often not to wear it though as I feel comfortable being me now. I know I’m not alone and all my friends don’t care what I look like. They say I am kind, funny, pretty, helpful, confident, and creative.

A lot of people tell me I am really good at my dancing. I love to dance. I have danced since I was a toddler. Dancing makes me feel happy because I get to learn new moves and I enjoy performing on stage so learning new moves means I can perform more. Dancing is really good exercise for my body.

Since alopecia started, I have met some nice people and made some new friends, with the help of mum I even have a friend with alopecia who lives in London, we enjoy catching up when we can, by face time of course.

I am so grateful for the opportunity of being granted the silver sponsorship for my dancing. Thank you. The sponsorship has made it possible for me to expand into new dance styles and learn the correct techniques. I am currently doing Ballet, Tap, and Jaz and I am so passionate the teacher is letting me try Silk Dancing. I am so excited about this and can’t wait to perform with my new skills.

The Wigs for Kids Program

Did you know that AAAF has a program that provides grants so that children with Alopecia Areata and their families can purchase a wig?

AAAF has been running our Wigs For Kids Program since 2012. 

AAAF believes that whether to wear a wig or not is a personal choice. As government assistance and Medicare / Private Health Care rebates are limited and vary across states, AAAF established the Wig for Kids Program to ensure that children wanting to wear a wig get the information, service and support needed.

To date, AAAF has provided more than $108,000 in grants.

Hear directly from some of the past beneficiaries

Do you want support in purchasing a wig??

Here’s everything you need to know:
The amount awarded is a total of $400.00 inclusive of GST.
A child for the purpose of this program is a person of 17 years or under.
To help care for the wig the amount granted can include the purchase of a wig stand, hair brush, speciality shampoos and conditioners, as well as the cost of the wig or part thereof with the cost of the wig
AAAF can provide a list of Wig Providers in your state. A  Wig Provider needs to be selected as part of this application.  AAAF has the right to refuse the Wig Provider if we do not believe the Wig Provider will provide an overall positive experience and quality product for the child.
The successful applicant will receive a voucher to present to the Wig Provider on collection of the wig. The Wig Provider will invoice AAAF directly quoting the voucher reference number.

Apply Here: Click here to access the Application Form

Before deciding on a wig, it is best to do some research on the best type and style of wig for you. AAAF has compiled a document to help you get all the information you need to make the right decision for you.

Click here to access the Wigs Document

Airlie’s Alopecia Story.

When I was four years old I started losing my hair in patches. My mum took me to the Dermatologist and I was told I had Alopecia Areata. I was given some DCP ointment which made the hair grow back.

When I was 8 my hair started falling out again, we went back to the dermatologist and were told to apply the ointment again, but this time I had a severe allergic reaction. We were going into lockdown because of Covid so was told it was too risky to start on an immune suppressant.

During homeschooling, I lost all of my hair everywhere and was told I had Alopecia Universalis. I was so worried about what people would think of me, that I didn’t want to go back to school or dancing. When it was time to go back to school, I got a synthetic wig. It was so itchy and hot.  I was worried about it falling off when I moved around. My teacher helped me create a Youtube video letting the school know all about Alopecia and in it, I said: “I’m not sick, I don’t have cancer, It’s just Airlie, with no hair”.

I started off taking my wig during class time because I was getting too hot and found it hard to concentrate, I then took off my wig during playtime where I wore my school hat instead, and eventually worked up the courage to take the wig off during assembly in front of the whole school! 

I showed the Youtube video to my dance school too, I got the courage to take my wig off during dance classes then at the end of year concert I didn’t wear a wig.

I spent eight months on immune suppressants that made me feel sick and tired and I absolutely hated the blood test at first because I was not used to them, my hair didn’t grow back during the eight months, so I decided to stop the medication as feeling sick was worse than not having hair.

Once everyone knew about my Alopecia, I felt so much better. I am proud of the person I have become, and I no longer care about not having hair as this is the new me!

“I was able to box my problems away.” Alessandro’s Alopecia Story

What is Alopecia?

Well it is something that I never knew about until 2019.

After my Nonno passed away my mum was hugging me and noticed a bald patch at the back of my head after I had a haircut. She thought that the hairdresser couldn’t cut hair and we didn’t think anything of it. A few weeks later, my parents noticed another small patch on my head.

So, my mum and I went to a doctor. The doctor said there was nothing to worry about and gave me an ointment. It was working for a bit then more bald patches started to appear. We decided to go to a dermatologist who prescribed new medication which did nothing except make me look real fat.

My mum found a group on Facebook and we discovered that I wasn’t alone. We found another doctor who put us on another medicine but it was ruining my liver so I was told to stop it. My Nonna always prayed and we decided to stop taking any medicines.

Every day I lost more and more hair. My mum got some natural medicines which made small hairs grow. I was bald and it was really tough. But I was a little lucky because we were in lockdown so I didn’t have to see anyone. I always wore my beanie and even when it was really hot I couldn’t take it off. It was like my security blanket. I felt everyone was looking at me and it made me feel really sad. I had some really good friends when we came out of lockdown but it was hard. I decided to let people know about alopecia and my primary school did an Alopecia Day where I made a presentation to show the school. It was hard but it meant people knew exactly what was happening to me. 

We stopped all medication but I wanted to see if my hair would grow back and my mum found a new doctor. She recommended a new medicine but I didn’t have any hope. However, a few months later I had patches of hair growing and my eyebrows grew back. I started high school this year and I found out there was another boy that has alopecia too. When I talk to people, it surprises us as they all know someone that has alopecia. My doctor told me that even though my hair has grown back I still have alopecia.

It was tough but what got me through was doing boxing.

We had to stop it but now that I have the sponsorship from AAAF I will be able to continue training and doing boxing sessions with Brooklyn Fitness Club. This has given me confidence and allowed me to box my troubles away. I also have more confidence in talking to people about alopecia and I think it is because I went to the AAAF camp and met people who are like me.

The support I have received from AAAF has been great and I cant wait for the camp this year.

Then we went to a new doctor, and he said to stop all medicine to see if any of my hair will grow back, some small hairs came back. We changed doctors again and she recommended a medicine that has an 80% of your hair growing back. A few months later in January 2022, my hair was fully restored.

Kyla’s Story

Kyla is a 13-year-old who has been living with Alopecia areata since 2020. Here is her story.

“I was diagnosed with Alopecia areata when I was 11 and I am now currently 13 years old.

It all started when my sister Lorelai was playing with my hair at my grandma’s house. The next week my mum took me to the doctor, and I was diagnosed with Alopecia areata.

By the end of March 2020 all my hair had fallen out except for a bit at the back that looked like a bald mullet. I then decided to shave off what was left, and I was a lot happier than I had been since hair started falling out. I was also very lucky that my mum decided to shave her head with me.

Over the next few months my hair grew back. At the end of June 2020, I received my first Bravery Buddy and I named her Desiree after my dancing teacher, who is very special to me. I was the first person with alopecia to receive a Bravery Buddy.

In September, I decided that I would like to get a wig. I then met Martine from Freedom Wigs (Martine also suffers from alopecia), and we organized a wig to be made for me. One of the reasons I wanted a wig was for my school photos. Unfortunately, my wig took a while to be made because it was made to my head shape, so we bought a cheaper, synthetic hair wig which I wore once and that was for school photos. My wig cost $5000 so we applied for a grant from Variety. One of the ironic things about my alopecia journey is that in late November 2019, I donated my hair to Variety’s Heart with Hair program. So, I was basically asking them – could I have my hair back. 

Kyla with her wig

Because my wig was made to my head shape, I had to shave all my hair that was growing back so my head could be scanned for the wig cap. A few days before I shaved it all off my hair started falling out again, so it felt like I was making the right decision.

In mid-October I was made the first Bravery Buddies ambassador by Tegan, who runs Bravery Buddies, and Bravery Buddies was opened to kids with alopecia because of me. My wig arrived in time for my year 6 formal and I was so relieved it arrived in time. One of my friends thought that it was my real hair even though they saw me in class the day before with nothing on my head.

In 2021, I started year 7. For the first couple of weeks, I wore my scarf but then I started wearing my wig once a week or more. If people asked questions about my scarf, I’d just tell them that I had alopecia, I’m not sick and it’s not contagious.

Year 7 was going good until about mid-June when my eyebrows started falling out. The same week that this happened I competed at a dance eisteddfod and danced bald for the first time and I came in 2nd and 1st. Then during lockdown my eyelashes started falling out.

I’m now currently in year 8 and this is my alopecia journey so far.”

Kyla with and without her wig

Thank you for sharing your story with us, Kyla!

“There is no handbook on this.” Hear Chrissy’s Story

Meet Chrissy! 

Chrissy recently shared her story with us about living with Alopecia Areata for 30 years. She shares openly and honestly about what the journey has looked like for her – and what it might be like for others, too. Read it below!

“I first noticed my Alopecia Areata about 30 years ago.  I was living and working on an island on the Great Barrier Reef at the time.  I had really long hair, and they used to call me “Leilani” because of my curly long hair and the frangipanis I used to wear behind my ear.

My alopecia didn’t worry me much back then, and I ended up living on the islands for about 10 years.

Fast forward to around 2002, and my Alopecia Areata turned into Alopecia Universalis within a short period of time.

So there begins the journey that many of us have taken. 

With complete hair loss comes the exploration of tools to get us through whatever we need.  Synthetic wigs, eyebrow and eyeliner cosmetic tattooing, human hair wigs, beanies, scarves, hats.  Most importantly supportive family and friends.  I dipped my toes in all of these pools.  I wear human hair wigs (Freedom wigs) most of the time so that I can blend into society without always having to be the centre of attention.  When I have my hair-free holidays (giving my wig the day off), I usually wear beautiful scarves and soft bamboo caps with lovely big earrings and clothes that make me feel good, or other times a funky hat or fluffy beanie.

I must admit, I still get butterflies in my tummy leaving my “girl” at home.  I feel very vulnerable and it’s not something I’m 100% into yet, but everyone’s journey is a little different.  What I do know is that it’s a very personal experience of growth and confidence in yourself.  Everyone embraces their alopecia at a different pace.  There is no handbook on this.  No right or wrong … no “do this or do that”.

All we can do is share our tips and tools and see if it helps someone become more comfortable in their own skin.  I wish that I had met someone with alopecia when I was first experiencing total hair loss.  Everything that I have now in my arsenal of confidence I’ve stumbled onto myself.  The soft bamboo caps that I wear under my lovely scarves used to cost me $35 each.  I’ve now sourced lovely soft cotton ones on eBay for around $5.  And op shops are a fantastic source for gorgeous scarves.  I’ve found some gorgeous ones for $2 each.

And I really love wearing my beanies… they’re super soft and I have them in all sorts of colours to suit what I’m wearing.  I started making them when I was living and working in Tasmania, and I travelled around Australia for about 2 years (driving a 1986 Toyota Corolla hatchback – hilarious!) and I made them as I went, stopping at little markets along the way to sell them to get some money for petrol, food and camping fees.  It was an amazing experience.

I mostly wear my beanies in Winter, and especially in bed, because as much as you can put lots of blankets on in Winter, your head still sticks out the top and gets so cold – no hair for insulation.  And beanies can be an amazing fashion accessory – not just a head warmer.

I love sharing my beanies with friends, and also with those going through chemo.  My beanies are lovely and soft, and aren’t at all scratchy on those sensitive beautiful bald scalps.  It’s like a hug for your head 😊 and it gives you those warm fuzzies.”

Do you love beanies too? 

We invite you to join us for the Alice Springs Beanie Festival,
Friday, June 24, 2022 – Monday June 27, 2022!
 
The Festival is a community-based event that brings Aboriginal and non-Aboriginal artists together to share their cultures and promote handmade textile arts. 
 
AAAF is sponsoring people to take a trip and attend the festival!

To find out information about how you can be sponsored by AAAF to go to the Beanie Festival, email sheridan@aaaf.org.au.

Join Chrissy and other members of the AAAF community and apply for a trip to the Beanie Festival!

Exercise, Alopecia and Wigs – Christine

Christine has Alopecia Universalis and it’s been an emotional journey. Exercise has helped her through it and AAAF is honoured to be able to sponsor her. 

Christine received sponsorship for her exercises classes where she participated in an 8-week challenge despite being nervous about wearing a wig. 

In the process, she embraced her strength and vulnerability, got stronger (inside and out) gained community, acceptance and confidence. 

Christine, we are so proud of you and so grateful you are a part of our community. 

AAAF recognises the importance of exercise and healthy habits in the experience of alopecia and sponsors individuals like Christine to support their journey. 

Dear reader we’d love to support YOU with your healthy habits and challenges. 


Apply for a sponsorship today. 

Isabella’s Alopecia Story

My Name is Isabella. I am 9 years old. I have had Alopecia since I was 3.

I was born with a birth defect called Gastroschisis. This means my organs were outside of my body when I was born and I needed surgery right away to save me.

I have a poor immune system because of this and Hair loss has become one of my main symptoms of this. I see my dermatologist every 3 months. I am currently on different medications to help supress my immune system to help my hair grow which has really helped me.

Sometimes I feel really sad. My Drs think I might be developing LUPUS and I have blood tests once a month. At the moment they can only help with me treat the side affect until we can confirm my diagnosis.  I am tired of having blood tests and taking tablets. 

I always loved Dancing, Dancing makes me feel so happy even if my body is tired. I started Cheer this year. It is fast, and so much fun. I am learning to tumble and have made a lot of friends.

Thank you for reading my story.

In November, Isabella was able to finally compete with her team last weekend at her very first dance competition. Here Mum wrote:

Out of 15 teams competing her team came in 2nd. As I was not allowed in the warm up area her Coach had to take photos for me which I am yet to get form her so once I have gotten these I will forward them on .:)

You can see on her face how much dance just lights her up in every single way. I watched with tears rolling down my face.

Her current treatments are working so well for her we have been able to stop her Chemo after 6 long months and her hair growth is just amazing, We are not at the stage yet where she can braid and do her hair like her friends.

However we can comfortably do low pony tails and where she was completely bald has now tuned into a beautiful fringe.

Isabella is a recipient of the AAAF Sponsorship Program which has allowed her to pursue her dancing (see images below). For more information about the sponsorship program click here.

How Meditation Affects an Anxious/Depressed Mind

Guest post by sponsorship participant Sheridan Ruth.

View the meditation support flyer here.

It’s believed that about 5% of adults worldwide suffer from depression and at least 4% suffer from an anxiety disorder.

Depression is a leading cause of disability worldwide. Anxiety disorders can affect everything from physical health to social wellbeing. The rates of both of these potentially debilitating mental health conditions are on the rise and, in individuals with alopecia, they’re even more prevalent.

Like alopecia, there is no cure for depression and anxiety. However, these conditions can be treated in a variety of ways, including pharmacologically, with various types of therapy, or with more holistic, alternative treatments. 

Among those holistic and alternative treatments is meditation, which is quickly gaining recognition as a powerful tool for coping with mental health conditions, specifically, anxiety and depression. 

Alopecia, Anxiety and Depression

Although alopecia doesn’t cause mental health conditions such as anxiety and depression, these kinds of conditions are more common in individuals with alopecia than in the general population. 

Individuals with alopecia are at an elevated risk for developing anxiety disorders or experiencing a serious depressive episode. There are many reasons this might occur.

Scalp hair is tied up with concepts of beauty, youth, virility, and femininity. Not having scalp hair, then, can feel like a failure to confirm to societal norms regarding physical appearance. It’s therefore unsurprising that individuals with alopecia tend to feel socially rejected.

Hairloss is especially an issue for women. Approximately 40% of women who have alopecia report that it’s caused marital problems and 63% claim that it’s caused career problems. This may be associated with the lower levels of self esteem and poorer body image in individuals with alopecia.

Of course, the loss of hair in and of itself is a loss. For this reason, it’s normal to experience grief. But when that grief persists and comes along with deep sadness and a loss of interest in previously pleasurable activities, it can quickly move into the realm of depression.

People with alopecia may also experience bullying from external sources. This can further compound the feelings of shame, isolation, and difference that contribute to anxiety and depression.

4 Ways Meditation Affects an Anxious/Depressed Mind

Meditation has a tangible and positive impact on both anxiety and depression. A regular practice can lead to material changes in the brain and its functions. Below are 4 specific ways that meditation affects an anxious or depressed mind.

1. Calming the mind

The DMN consists of different parts of the brains that interact when an individual isn’t focused on the outside world. In other words, this is where out minds go when they’re wandering. It’s where we worry about the future and ruminate about the past. 

An overly active DMN is associated with unhappiness. Indeed, people with depression have a hyperactive DMN. 

But meditation can quiet the DMN and, in turn, reduce the symptoms of anxiety and depression. In fact, long-term meditators are able to take themselves out of the DMN better than those who do not practice meditation.

2. Regulating Fear, Stress, and Anxiety

The amygdala is the part of the brain that processes fear, stress, and anxiety. This is where our fight or flight response comes from.

Animals also have this part of the brain. Researchers have found that animals who face significant stress and anxiety in their lives are more likely to have a highly developed amygdala. This suggests that there’s a correlation between exposure to fear, stress, and anxiety and a more robust amygdala.

What some research has found is that mindfulness meditation reduces the size of the amygdala. Researchers believe that this is the result of a reduction in stress. 

3. Strengthening the Pre-Frontal Cortex

Meditation not only reduces the size of the fear, stress, and anxiety processor, it also increases the thickness of the pre-frontal cortex. This part of our brain is where “higher order” brain functions originate. That is, this is where our awareness, concentration, and decision-making skills live.

With more meditation, the connections in this part of the brain grow stronger. Individuals become better able to access higher order brain functions, especially in times of stress.

4. Improved Emotional Regulation, Perspective Taking, and Self-Reference

If we’re talking about scientific research into the effects of meditation on the brain, we would be remiss not to mention the work of Harvard-based neuroscientist Sara Lazar. Lazar’s work has shown numerous physical changes to the brain as the result of meditation.

Her work has shown that meditation has the potential to change gray matter concentration, the posterior cingulate cortex, the temporoparietal junction (TPJ), and the cerebellum. These areas are related to emotional regulation, self-referential processing, and perspective taking, which are all areas in which people with depression and anxiety struggle. 

How to Get Started 

Be patient with yourself and recognize that meditation is a practice. It takes time and consistent effort in order to realize the benefits. However, Lazar’s work showed significant changes in the brains of her participants in as little as 8 weeks – so it doesn’t take more than a few months to start seeing changes from a meditation practice.

The most important things to note in terms of where to start have to do with the amount of time you sit, how often you sit, and what resources you use to make meditation enjoyable. For in-depth information on all of these and more, be sure to check out our 5 Tips to Start Meditating article.

Sheridan Ruth shares this information from what she has learned through her meditation practice and studies, sponsored by our Sponsorship Program. If you have a form of Alopecia Areata, are a resident of Australia you could also receive support for your passions and hobbies. Learn more about the sponsorship program here. 

About the author

Sheridan is a world traveler, women’s empowerment advocate, yogi, and Yoga Therapist. She supports women with hair loss to feel more self-acceptance, step into their true power, and radiate confidence. Sheridan supports women at various stages of their journey, who share one common goal – transforming their hair loss journey into a self-empowering, spiritual journey. 

Since losing her hair at 7 years old, Sheridan battled the ups and downs of hair loss for most of her life. Brought to the yoga mat by her own mental health afflictions, Sheridan was once unsure about what to do and where to go, completely disconnected from her reality and her body. Today she is motivated to assist others in moving past their own entrenched traumas and self-confidence issues through the practice of yoga. She accomplishes this through a deep understanding and constant study of the connection between mind and body and uniting the esoteric teachings of this ancient practice with valuable, evidence-based western sciences such as psychology.  

Sheridan has completed her 200-hour Yoga Teacher Training Certificate in Power Yoga and Healing Sequence and completed a certificate in Yoga Therapy & Yoga Psychology, all while building her women-centered non-profit in Medellin, Colombia. 

She now exclusively serves the hair-loss community, creating safe spaces for her community to dive deep into self-inquiry, reconcile with their bodies, and connect with a sense of grounded confidence. Her calm but energetically powerful teaching style creates a safe and loving space in which to grow and ultimately encourages a better relationship with your physical and spiritual bodies, greater awareness, and a profound sense of self-love. 

http://www.sheridanruth.com

Frankie’s Alopecia Story

My name is Frankie. I am turning 8 in August and I have Alopecia.

My mum noticed a small bald patch in my hair when she was washing it one day in May 2020. Mum accused me of playing with her razor but I hadn’t touched it. Mum watched it for a couple of weeks and since it was getting bigger we went to the doctor. The doctor diagnosed me with Alopecia and prescribed a steroid cream but the bald patch continued to get bigger and more bald patches started. The doctor then sent me to a specialist dermatologist who prescribed prednisolone. This medicine made me feel very emotional and I hated it. What was worse is that the medicine didn’t help either so we decided to stop taking it. Over 6 months most of my hair fell out and I now have Alopecia Totalis.

At the start I didn’t like it and I thought no one would want to be my friend if I was bald. Now I am ok with it. I still have all my friends and no one is mean to me.

Recently I started going to art classes. A sponsorship from the Australia Alopecia Areata Foundation has helped me do this. I have made new friends at art classes and everyone treats me the same as they treat everyone else. They help me forgot that I have Alopecia and I feel good.

Alopecia Areata…. It’s life changing

Thank you to Australia Alopecia Areata Foundation for the sponsorship.

Learn more about the sponsorship here.

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