“I don’t let not having hair get to me”: Jesse’s Alopecia Story

Jesse recently received a sponsorship from AAAF for his taekwondo classes. Read his experience living with Alopecia Universalis and how participating in taekwondo has helped him through his journey.

Hello, I’m Jesse & I have Alopecia Universalis. I also have ADHD, OCD & involuntary facial and body ticks, especially when I get stressed.

At the age of nine, is when I started to notice hair loss in certain areas on my scalp. It started as Alopecia Areata. Over the course of a year, I would say all my hair had fallen out by then, including all body hair. This really affected me at first due to the fact I was the only person in my entire school with alopecia, so I stuck out & was made fun of quite often, being the butt of the joke all the time, because primary school kids just weren’t used to it.

Even a teacher told me to just shave my head and be done with it, but as anyone with Alopecia can understand, it’s not that easy to just voluntarily get rid of what little hair you have left, not knowing if it will ever grow back, so my patchy head made some people at school feel uncomfortable, mostly adults, which is ironic, as they are supposed to be equipped to handle uncomfortable situations better than kids, but this isn’t always the case.

Some kids, including my close friends, didn’t treat me any differently, but before all of that, back when I started losing my hair, I started martial arts with ATI.  At first I had trouble getting there, due to my ticks & OCD, but over time I started finding that doing it was really beneficial for me, helping me to exercise & concentrate, which took my mind off my problems.

Another benefit was when I started taking medication for my tics, OCD & ADHD, I gained a lot of weight, so when doing taekwondo I was getting a workout & this really contributed to me losing that weight again. The reason that means so much to me is that I was extremely unhappy with being overweight & never was before all of the medicine, not only that, but I didn’t feel attractive or confident, on top of feeling self conscious from having no hair, so losing weight meant a lot.

Skip to high school now, in year ten at 15 years old, nearly 16 and I don’t care about what people think and I don’t let not having hair get to me. I’ve lost all that weight that I used to have, being more active now more than ever, which I thank ATI for starting that. Now that my Taekwondo journey has come so far, being so close to a black belt and my Mum has encouraged me to never give up, even when at times, it was all I wanted to do, it’s important that I continue and do my gradings and tournaments but it’s a really expensive sport to do. My Mum said it costs us about $3,500 a year which is why we never go anywhere on school holidays and why I can’t get new sparring gear.

The AAAF sponsorship doesn’t cover equipment but it will help so much because Mum will be able to save up for foot and shin guards that actually fit me (I’ve been using the same ones since I was little) Having money issues causes a bit of stress at home and this sponsorship will really ease the financial burden for my Mum & my brother and me, so I can not feel guilty about going to ATI.

I remember when Mum couldn’t afford to pay the $50 administration/registration fee because we had no food in the house. I know that the AAAF paying for my fees for a year will not only allow me to continue doing something that builds my self esteem, keeps me fit and will help me when I join the army next year, but it will allow me to feel useful because I’m giving back to AAAF by bringing awareness to the community about the great support they provide people with Alopecia & their families too.

I’m really thankful to AAAF and look forward to updating you with my progress and milestone check-ins over the next 12 months.

Jesse Ferguson, 15, Perth, W.A.

My Alopecia Story – Jamie Duncan

I’m delighted to share with everyone here that I was selected for a music education sponsorship through AAAF’s 2022 sponsorship program, and I couldn’t be more excited about the incredible opportunity.  I am so grateful to AAAF and this community for supporting me on my alopecia journey and wanted to share more about my past, present and personal ambitions for the future – look out for 4th brother!

I think my alopecia story actually started when I was much younger than when I was first diagnosed with Alopecia Areata, which didn’t happen until the age of 27.  At an earlier time in my life, it was never noticeable to me, or anyone else as I recall, as I was an especially cool 90’s pre-teen with a fashionably long-ish middle parting haircut at the time – yo!  When I did have hair on my head, I had thick hair, like my Mum’s I always said, but I do remember a moment one day as a kid, just kind of playing with my hair, and noticing that, as I did, it was coming out in my hands.  I remember thinking, “that’s weird, let me do that again and see if more comes out”, and it did, so I promptly stopped, thinking I might just lose it all if I didn’t!  I didn’t even tell my parents, brothers or friends about it, it was just something that happened and then I completely forgot about it.

That earlier experience did return however, at 27 as I mentioned earlier, and at a time that was easy for me to associate to memory, as my wife Laura and I were excitedly expecting our first child, our daughter Carmen.  After noticing the classic signs of Alopecia Areata, small, Scottish 50 pence piece sized patches, I took myself off to the GP and was duly diagnosed with AA.  It was very much a “do you have any stress going on in your life at present?”, line of investigation, something I think I could always answer yes to, but I was, am, a relatively laid-back individual, and wouldn’t have suggested anything significant as a known source of concern.  Anyway, I was given a treatment of steroid lotion to massage into my scalp and sent on my merry way to see if it helped.

Whether it was the lotion or the excitement of being a new father for the first time I did experience regrowth.  Great, I thought!  Until…  yeah, Laura pregnant again, our beautiful son Donnie this time, and all the signs of progressive AA hair loss all over again.  I personally put it down to coincidence, but whatever it was, this time it wasn’t showing any signs of recovery, not over weeks, months or even years, and I decided that I just had to live with it.  That was probably the first time that having AA was on my mind, and where I was conscious of its effect on my appearance, even though it was no more than about 10% to 15% of my hair back then.  Every trip to the barbers involved an explanation and a lot of people had an opinion on it.  Looking back, I’m actually amazed at how few people actually understood the condition.

Fast forward to a new life in Australia for us all, and at 40 things really took a turn.  I really depended on the AAAF community, as I was losing hair FAST, and EVERYWHERE.  My AA progressed to Universalis and I honestly didn’t know what to do or how to deal with it.  It was emotionally draining, I remember that.  I was anxious and fearful about the state of my general health at that time.  I was waking up with piles of hair on my pillow, showering and handfuls of hair coming out in my hands.  I was open to trying anything and spent months in treatment for steroid injections in my scalp, as that was a priority for me if anything could be done.  I remember experiencing minor benefits in one area, only to be losing hair in another, it was very difficult.  I was never a hairy man, but eyebrows, eye lashes, face, under arms, arms, legs all lost hair and you can’t prepare for that happening or the emotional and psychological impact of that.

I braved the shave.  I took myself to the barbers the first time I decided to do it.  The guys there were great!  We started on a gauge 4, then a 3, a 2, 1 and even zero.  I still wasn’t satisfied and said, “can you just use a razor?”  I got the cleanest shave I’d ever had in my life – and it felt amazing, different, but amazing!  I quickly realised this was something I’d need to master at home and have been shaving daily ever since – you see I still have little patches of facial and head hair.

It was tough, but with the love and support of family, friends and great communities like AAAF, I was able to get through it, and I now spend every opportunity I’m presented with helping less aware people understand alopecia better.  Keeping my mind on family, health, happiness, work and fun is a great distraction from alopecia and that’s where the sponsorship comes in.  I’m an aspiring creative, with a love of house music and I write, produce and DJ for fun in my spare time.  With the support of AAAF’s Sponsorship Program, I was able to sign up to a program of courses at Point Blank Music School in London, where I take classes online, collaborate with classmates from around the world and have had the most amazing time learning today’s technology for producing music.

Remember 4th brother?  Taking the course has given me the confidence to progress my music goals, and this year I kicked a life goal with AAAF’s support, releasing my first piece of music publicly and dedicated to AAAF “4th brother – feels good (aaaf demo mix)” on Spotify, Apple Music, YouTube, Amazon Music and others and I hope to release more in the future too.  It’s been amazing to have the support to help develop my skills, build my confidence and share my music and I couldn’t have done it without this support, so THANK YOU AAAF, you do amazing work in support of so many and I really, really appreciate it.
Jamie / 4th brother

How Sheridan overcame anxiety and low self-confidence and now uses her Alopecia as fuel for her life’s purpose

She is a certified yoga therapist, meditation facilitator, an empowerment coach and a member of our AAAF community!

She has worked with many women with Alopecia Areata to help them navigate the ups and downs of the journey, come into radical self-acceptance and cultivate more self-love and confidence.

She has come a long way since losing her hair at the age of 7, to struggling with anxiety and body image issues, to becoming a leader in the Alopecia community who helps others move through the experience in an empowered way.

She passes on her wisdom to those who may need support in navigating the journey in her 3-part video series on YouTube.

How it started: My Alopecia Story. Part 1 Growing up with Alopecia

Sheridan shares the experience of losing her hair at a young age – from noticing the first bald patch, to trying different treatments, to buying her first wig.

Alopecia Success Story – Alopecia as an Adult

She talks about the journey of coming into adulthood with Alopecia and how to navigate things like the workplace and romantic relationships. She also shares what helped her on her path to accepting uncertainty and cultivating self-love and self-acceptance.

My Alopecia Story: Part 3 – How I got here

Sheridan uncovers the key practice that has helped her to accept her Alopecia, love herself no matter what, and feel confident in her skin.

Check out all 3 of Sheridan’s videos below to hear the entire story!

8 ways to talk about Alopecia

How to embrace your alopecia with grace and good humor

The impact of an alopecia areata diagnosis is both immediate and incremental.

We’re not going to lie: losing your hair is a big deal.

That’s why learning to navigate the external world is critical to living life fully.

Sadly, some folks will still stare or make rude comments to us. But society as a whole is more accepting. Body shaming is, thankfully, becoming a rarity. People—especially youth—more readily embrace physical differences.  And many people are so self-involved that they won’t even notice you.

The Only Way Out is Through

Acceptance is not a strictly linear process. And there isn’t a timetable; everyone is different. But to gain real and lasting self-acceptance, most of us have grappled with the five stages of grief: denial, anger, bargaining, depression and, finally, acceptance. If you allow yourself the full range of experiences and share how you’re feeling, you’ll be in a better place.

Don’t Judge Our Choices 

Friends and family may be well-meaning, but too often questions sound like judgments. We might want to share our condition…or keep it private. We might want to wear a wig…or rock a bald head. And what we want to do can change…sometimes daily. Support is so much less hurtful than a series of suggestions that we hear as criticisms. Let us talk it out our own way. 

Your Doctor Is Your Partner

A supportive physician is a powerful ally on your alopecia journey. They will be up-to-date on treatments. Your doctor will also have a network of referrals to share. The more candor you muster, the better advocate you’ll have.    

Get—and Stay—Connected 

Finding an online community can counter the isolation many of us feel. Your new tribe is an invaluable, ongoing resource of what to expect, what works and what doesn’t. They also offer a safe sounding board for when you need to vent. And they’ll cheer your triumphs like no others can. 

Show Your Creativity 

Alopecia Style™ is limitless and runs the gamut from classic to cutting-edge, feminine to fierce. You can camouflage your hair loss with blinged-out ball caps or patterned soft scarves. Or shave your head and get inked with a show-stopping tattoo. You can find a custom milliner to design a fabulous fedora. Share your discoveries with sister alopecians. Alopecia style is all about showing the world how uniquely beautiful you are. 

Makeup Artist As Bestie

Women with alopecia often rethink their grooming regime. Getting a private lesson on how to play up your eyes or do a dramatic lip can be a real boost to your self-esteem. Learning effective brow techniques is critical to building our new look. Ask for recommendations; professionals who work in film, magazines and TV are obvious go-to’s. Esthetician schools are another great place to locate talent. The artist wants to help you. Be open with them and remember that it’s perfectly ok to shed a tear.  

Get Outta Town 

Want to experiment with your look but don’t want to unexpectedly run into family, friends or colleagues? Your appearance and how you feel about it is another way to “talk” about alopecia. Why not try going bald on a vacation? (don’t forget the sunscreen!) Or wear a wig on your next business trip? If you like it, great! You can unveil your new style at home with confidence. If you don’t, no one’s the wiser.  

Do Good, Be Happy

Research has proven that volunteer activity spikes serotonin, the feel-good chemical your body naturally produces to elevate mood and reduce anxiety. Pick up trash on a trail. Work in an animal shelter. Mentor a teen. Whatever you do, you’ll be outside your own orbit and you’ll see the world in a new light. It’s another opportunity to have a quick and casual chat about alopecia with new friends.

For more information on supporting women with alopecia areata, visit www.baldgirlsdolunch.org or email hello@baldgirlsdolunch.org.

Tips for managing the uncertainty of Alopecia and letting go of negative thoughts around your hair loss

Alopecia is a life-changing event that causes a lot of unknowns to enter into our life. Since this can feel scary, a normal response to this is for the brain to focus on the negative aspects about all of this new uncertainty.

However, these negative thought patterns can take up a lot of our energy and, ultimately, don’t change the fact that we are still experiencing hair loss and all the unknowns that come with it. Negative thoughts can eventually lead to us feeling tired, stuck and low on self-confidence.

Once we can release these negative thoughts we can begin to experience more acceptance of the uncertainty and hair loss journey as a whole.

Here are 5 tips to breaking the pattern of negativity so you can begin feeling more acceptance, confidence and ease in your experiences.

1. Notice the thought

Simply notice that you had a negative thought, without judging yourself or pushing it away.

2. Recognise the emotion(s) that come with the negative thought

Notice what emotion(s) show up when you have the thought.

Example: “I’m going to feel weird if they know about my hair loss.” One emotion that could come up from this thought is shame.

3. Process the emotion through the body

Do some movement (like dancing, exercising or yoga) or a self-care practice, like journaling, which will help to move the emotion through you.

4. Banish the thought

You can use language like: “I banish you”, “You are no longer welcome here”, “You no longer serve me and I release you now.”

5. Create a new empowering thought

Replace the negative thought with something that feels positive and empowering.

Example: Instead of “They are going to shame me when they find out about my hair loss” replace it with “They are going to be inspired when they hear about my hair loss” or “I’m going to feel relief when they know about my hair”

Choose a thought that feels true for you. This may feel hard at first, but the trick is to keep practicing. Over time, you will be able to create new thought patterns!

One of our very own AAAF community members, Sheridan Ruth – a yoga therapist, meditation facilitator, and empowerment coach – created a video outlining these 5 steps in more depth. Watch it here!

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.

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

Navigating Alopecia: Resources for Parents

Whether you have been newly diagnosed or have been living with Alopecia Areata for some time, AAAF recognises that when a child has Alopecia Areata, this affects the whole family. Information provided below is based on psychological research, AAAF’s committee members and our broader community’s lived experiences. We hope that the information, advice and stories we share here can help you and your family to have a positive journey.

About Alopecia

Alopecia Areata is a disease that results in the loss of hair on the scalp and elsewhere on the body. It’s often not well understood and can be confusing. Alopecia Areata is believed to be an auto-immune condition.

This means that our immune system, which is supposed to defend against disease and infection, begins attacking a part of our own body. For people with Alopecia Areata, the body treats its own hair follicles as foreign tissue and attacks them, which slows or stops hair growth.

There are 3 main types of alopecia:

  • Alopecia Areata, which means patches of hair loss.
  • Alopecia Areata Totalis, which means complete loss of hair on the scalp.
  • Alopecia Areata Universalis, which means complete hair loss to the entire body.

In all forms of Alopecia Areata, the hair follicles remain alive and are ready to resume normal hair production whenever they receive the appropriate signal. That means that hair regrowth may happen spontaneously even without treatment and sometimes after many years of hair loss. Each person experiences the condition differently. The hair may grow back and fall out again many times, or cycle through various types of alopecia throughout their lifetime.

Frequently Asked Questions

Who gets Alopecia Areata?

Alopecia Areata occurs in males and females of all ages and races; however, onset most often begins in childhood.

Is it life threatening?

No. However, Alopecia Areata is life-changing and its sudden onset, recurrent episodes, and unpredictable course can have a deep emotional and psychological impact on the lives of those affected by this disease. People with Alopecia Areata are fully capable of living happy, healthy lives and there is no reason the condition should hold them back.

Is it common?

Roughly 1-2% of the population have some form of Alopecia Areata. It is best to describe it as “not uncommon”.

What causes Alopecia Areata?

Alopecia Areata is considered an autoimmune disease, where the immune system mistakenly attacks its own hair follicles. Why the body does this is still unknown. Many people say the condition is stress induced, but there is little consistent scientific proof of this.

Is it infectious?

No. There is no way in which a person with Alopecia Areata can transmit the condition to anyone else.

Is Alopecia Areata inherited?

Scientists believe that there may be a number of genes that predispose certain people to the disease. It is highly unlikely that a child would inherit all of the genes needed to predispose them to the disease. Even with the right (or wrong) combination of genes, Alopecia Areata is not a certainty. Studies suggest that in identical twins, who share all of the same genes, the concordance rate is only 55%. In other words, if one twin has the disease, there is only a 55% chance that the other twin will have it as well. This shows that other factors besides genetics are required to trigger the disease.

How does it start?

The body’s immune system wrongly attacks the growing cells in the body’s hair-producing follicles, where the hair starts to grow. This stops them producing new hair and causes existing hair to fall out. The cells which produce the hair, the follicles, do remain active so there is always the potential for hair to start re-growing

What body areas are affected?

The scalp is the most common area and generally the first area to experience hair loss. Hair loss can also occur from the eyebrows, eyelashes, facial hair, arms and legs. Fingernails may also be affected with pitting.

What does it look like?

The patches are smooth and round, sometimes with few remaining hairs in the centre. Around the edge of the patch some stub-like hairs can usually be seen (often called “exclamation marks” haris, as they are thicker at the tip than at the scalp level).

Can the loss be diffuse?

Less commonly, some hair may be lost over wide areas, causing general thinning of the hair. This can cause “hair to turn white overnight” by selectively affecting dark hairs and leaving grey hairs.

How is it diagnosed?

Alopecia Areata is diagnosed through a medical history and physical examination. Your doctor will ask questions about the hair loss, look at the pattern of hair loss, and examine the scalp. Hair can be plucked and examined under the microscope and if tinea is suspected, hairs may be taken for culture. For very careful study, a small biopsy may be performed for microscopic examination of the scalp skin. In most cases, tests are performed only if there is a need to assess general health. Blood tests do not show any abnormality in people with Alopecia Areata.

How will Alopecia Areata affect me and my family?

This is a common question, particularly for children, teens, and young adults who may live with the effects of Alopecia Areata for many years. The comforting news is that Alopecia Areata is not a painful disease and does not make people feel physically sick. It is not contagious, and people who have the disease are generally healthy otherwise. It does not reduce life expectancy, and it should not interfere with going to school, playing sports and exercising, pursuing any career, working, marrying, and raising a family.

Can the hair grow back?

There is every chance that the hair will regrow with or without treatment, but it may also fall out again. No one can predict when it might regrow or fall out. The course of the disease varies from person to person. Some people lose just a few patches of hair, then the hair regrows, and the condition never recurs. Other people continue to lose and regrow hair for many years. A few lose all the hair on the scalp; some lose all the hair on the scalp, face and body. Even in those who lose all their hair, the possibility for full regrowth remains. The course of Alopecia Areata is highly unpredictable, and the uncertainty of what will happen next is probably the most difficult and frustrating aspect of this disease. The re-growth can be any texture and colour, from fine, downy white hair, to hair identical to your original hair colour and texture. 

Does Alopecia Areata affect general health?

No. All aspects of general health are unaffected – apart from the rare associations with other diseases. People who are affected by Alopecia Areata are usually otherwise healthy.

How to explain Alopecia to Young Children

Alopecia Areata can be difficult enough to explain to adults, so explaining the complexities of how autoimmune conditions work to children can feel daunting. 

However, AAAF believes that it is very important for children with Alopecia Areata to understand what is happening to their body as much as is possible for their age. Understanding the condition will help children to feel more in control of what’s going on and feel more confident, and help to combat feelings of fear or anxiety. 

Here is an example which may help you to explain the condition to children:

“Everyone has a system in their body which helps to keep them healthy. It works like a troop of very tiny soldiers, which receives orders from your brain when you are sick or injured. These soldiers (called the immune system) seek out the things that might make you sick and attack them, like germs or viruses, in order to keep you healthy.

Sometimes, these soldiers get confused by the orders they get from your brain, and instead of attacking germs or viruses they attack parts of your own body. This is what happens with alopecia areata. Your soldiers don’t understand their orders, and they begin to attack your hair follicles -the place your hair grows from. This is what makes the hair fall out.”

Understanding Your Options

Treatments

Although there is no cure for Alopecia Areata there are medications available that can help hair grow back in some cases, at least temporarily.

Here are some important things to keep in mind:

  • Although these treatments may promote hair growth, none of them prevent new patches or actually cure the underlying disease.
  • Consult your health care professional about the best option for you. A combination of treatments may work best.
  • Ask how long the treatment may last, how long it will take before you see results, and about the possible side effects.
  • Seek second opinions from other professionals when necessary, as different practitioners may suggest different options.
  • Seeking information from other people with Alopecia Areata can be a great way to find out more.

Electing not to try any treatment is a completely valid option. Many people find the emotional ups and downs attempting treatments more distressing than accepting the condition and choosing to move forward. AAAF believes that supporting emotional and psychological health is vital during this time, and recommends reaching out to a mental health professional if needed. 

When discussing any treatment for a child with Alopecia Areata, AAAF believes it is always best to try to include the child in the decision-making process, as much as is age appropriate. Making sure they understand what is going on will help to combat feelings of anxiety and fear, and having a say in their medical treatment will help them feel more in control of the condition.

Wigs and hairpieces

Many people with Alopecia Areata choose to wear wigs or other hairpieces. These can help them feel a sense of control over their appearance and their condition, and feel more confident when in public.

There are many different types of wigs and hairpieces available and buying a wig for the first time can be challenging. It can also be a major financial investment, so to minimise the risk of getting something you’re not happy with, AAAF has a guide available on our website which may help you decide what is right for you. Our Wigs for Kids program is also available to assist in the cost of purchasing a wig for children under the age of 18.

In general, AAAF does not recommend wigs for very young children, as they can be difficult to care for and may get in the way of kids during normal play.

Hats and scarves

It is important to note that wigs and hairpieces are not the only way to manage alopecia. Many other people feel that wigs are uncomfortable or get in the way of day to day life. Once again, there is no right answer – just what works best for your situation. These people may choose to wear hats or head scarves to keep their heads covered or protected from the weather. 

Other considerations

In addition to these methods of head covering or treatment, there are measures that can be taken to minimise any negative effects of hair loss, particularly relating to loss of eyelashes and nasal hair.

  • Sunscreens are important for the scalp, face, and all exposed areas.
  • Glasses or sunglasses protect the eyes from excessive sun and and from dust and debris when brows or lashes are missing.
  • Wigs, caps, or scarves protect the scalp from the sun and keep the head warm.
  • Ointments or saline spray can be applied inside the nostrils to keep them moisturized and help protect against dust or particles invading the nose when nostril hair is missing.

Support for your Family

AAAF has a variety of resources available designed specifically to assist the entire family in their journey with the Alopecia Areata. Which options work best for you will depend on the age and personality of the child with alopecia, and you family’s individual situations. Further information about all resources listed here can be accessed via our website: www.aaaf.org.au

Registry

By registering with AAAF, we can keep you up to date with the latest research, events and programs in your area. We strongly recommend registering via our website as it is the best way to stay in the loop about anything new.

Video Resources

“Alopecia Areata: Why Does My Hair Fall Out?” was created by the AAAF as a resource for children, their families, friends and schools to help understand and explain Alopecia. It is aimed at 4-12 year olds and contains information about what the condition is and how to manage it. It also includes interviews with several children with Alopecia and their experiences with the condition. It is available in DVD format or online. 

For older children and teens, we also have a series of videos discussing some of the emotional issues that come with Alopecia Areata, such as telling friends about the condition and coping strategies, and a series on styling, including makeup tips, information about wigs and how to tie head scarves. They are available as a DVD from our e-store, or online.

Support Ambassadors and Branch Managers

AAAF Support Ambassadors assist the Foundation by actively promoting and creating awareness about the condition. All have personal experience in living with Alopecia and can be contacted directly for one-on-one support, along with hosting information sessions about Alopecia at schools, clubs and youth groups.

AAAF has Branch Managers in most states. These are all individuals who have experienced Alopecia Areata themselves, or are a parent supporting a child with the condition. They are the first port of call for people with Alopecia Areata in their state and can provide assistance and answer inquiries. Branch Managers also coordinate events in their state on behalf of AAAF and are a great way to get in touch with other people who are in the same situation as you.

Support Groups

One of the most beneficial things you can do for children with alopecia is remind them they are not alone. The AAAF has branches in most Australian states and local online forums which you can connect to. As a parent, you can use these groups to connect with other parents within you local area to organise meetups or playdates, or share advice and stories. For teens and young adults, the groups are a great way to make friends with other people with the condition and provide a supportive environment to share any questions or concerns they may have with people who have been through the same experiences.

Brochures

AAAF has a range of brochures about Alopecia Areata which can be provided in hard copy or access via our website.

  • Teens talking about Alopecia Areata
  • Coping with Alopecia Areata
  • The grieving process that can accompany hair loss
  • Parents talking to parents
  • General information

School Pack

AAAF has created a School Pack designed to help teachers and educators introduce Alopecia Areata to the classroom. Developed with the help of child psychologists and early childhood educators, this pack includes lesson plans, advice from other parents, sample letters, and templates to use to inform school staff about Alopecia Areata. 

The School Pack was designed with the belief that information, awareness and communication are the best tools for combatting bullying and ensuring a happy and healthy school experience.

Wigs for Kids

AAAF believes that the decision whether or not to wear a wig 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.

Events

The AAAF holds many different events throughout the year. From trivia nights and Open Days, to casual catch ups and morning teas, we have something that will suit children and families of any age. You can find out about our events by registering, following us on Facebook, or checking out our website.

School and Bullying

School can be a complicated time for children with Alopecia Areata. For this reason, AAAF has created a School Pack, designed to help parents and teachers to introduce Alopecia Areata to the classroom which is available on the AAAF website. For further information about managing the schooling period, consult the School Pack.

For young people with Alopecia Areata, bullying can be a concern. It is also common for other children to mention the hair loss, point it out or ask invasive questions about it. This can feel very uncomfortable for the child with alopecia. Many children who engage in these behaviours do so simply because they don’t understand what the condition is.

If your child reports being bullied due to their condition, it is important to ascertain exactly what happened and whether it was truly bullying or simply ignorance. This will affect how you will want to manage the situation. Serious, consistent, or physical bullying should always be reported to staff. Lack of understanding of the condition can be dealt with through information and awareness.

Want specific tips on how to navigate bullying? Go to our Parents Pack under the “School Bullying” section or our School Pack.

Siblings of Children with Alopecia Areata

When a child is diagnosed with Alopecia Areata, it affects the whole family. Siblings can go through a wide range of emotions that can affect their attitudes and experiences. 

Siblings of children with Alopecia may feel some of the following: 

  • Protective of the child with Alopecia Areata
  • Confusion about what is going on and why
  • Jealous of the attention the child with Alopecia Areata is getting
  • Anxious about developing the condition themselves
  • Guilt that they do not have the condition (“Why them and not me?”)
  • Embarrassed or upset when people about the condition, or stare at and tease their sibling

Equal treatment for all children

It’s important to be mindful of spending time and attention on siblings equally. Spending time with each child individually can help, as can encouraging involvement in activities like sport or the arts, where each child can shine and feel accomplished by their own merits.

Talking and listening to your children

Ensure your child knows they can always come to you and share their feelings and have them respected. Understand that they may sometimes express negative feelings like jealousy, anger or guilt about their sibling’s condition and that this is normal. If you sense that these feelings are worsening or not going away with time and management, you may wish to seek support services such as a school counsellor or psychologist.

Want more tips, resources and stories? Check out our Parents Pack, a 27-page PDF full of everything you need as a parent to feel supported throughout the journey of Alopecia Areata!

“I can’t wait to see what challenges the year brings me”: Victoria’s Alopecia Story

Victoria recently received a AAAF sponsorship, which she used to take singing lessons. Below she describes the ups and downs of her experience living with Alopecia Areata.

“At the age of 4, I was starting to lose my hair in small patches here and there. This was the first time it ever happened to me. My mum and dad were doing everything they could to help and find out what it was.

When we went to the local doctors, my parents were going to find out what this was all about. They told us that it was called alopecia areata, an autoimmune disease which can affect the hair follicles and cause the hair to fall out. They told us to start putting this special DCP cream on every couple days. Of course, we forgot here and there, and my parents were all like “oh no, shoot!” but they saw it was okay. Eventually my spots started to disappear, one by one, my hair started to grow out of each spot, and it was soon covered entirely.

My parents and I were so relieved to see that it had gone away. (Well at least for now.) What do I mean? Well, while I was in year one, my hair started falling out, AGAIN! I know right! It’s kind of crazy. My hair started falling out in spots. Not fully, just patches like before. We went through the same process as before, just putting on the DCP ointment every few days. And just like before, my hair got better.

Now this time my alopecia was just B R U T A L!!!! This has never happened this bad before. My hair was falling out so much. I was 8 in year 3 at the time. At first it was just like before when my hair fell out in patches. We thought it was going to be like normal but NoOoOoOOOooOooOOoO, it had to be different. My hair all disappeared after a few weeks. All I had left was the tiniest ponytail in the world on the bottom of my head at the back.

Since this was the worst it’s ever been for me, we had to start having visits to the Sydney Children’s Hospital as an outpatient every 5-7 weeks. The nurse even changed the strength of the ointment to help with my hair. It was also so bad that we had to start getting me wigs. My favourite wig was one that looked like my hair before it all came out.

At around December 2020, little sprouts of hair started sticking up and it slowly started growing longer and longer. By halfway through January 2021, my hair sprouts were about the size of a pixie cut, so I decided to cut the rest of my hair off at the back and have a pixie cut. My teachers told me that I was rocking the pixie cut.

Then in June, I turned 10 and my hair started falling out AGAIN!!!!!  But this time just in patches as well. This was fine. Now every time one spot gets better, another spot reappears. It keeps on going. I am turning 11 this year and I can’t wait to see what challenges the year brings me. Maybe it’ll be for my alopecia or maybe just fun things will come my way. Anyways, it’s not like I have a crystal ball that will tell me everything about my future, do I?”

Thank you for sharing your story, Victoria!

Do you have Alopecia Areata and are interested in getting sponsored for an activity you love?

We support many through their journeys and we help them achieve their dreams. You can find more details about our sponsorships all through our webpage and social media.

Faye’s Alopecia Story.

Hi I’m Faye, I have had alopecia since I was five years old. This is the same age I started sailing.

During this time, I have experienced small amounts of regrowth but most of the time I haven’t had any hair. Some of the time I have not had eyebrows or eyelashes. It’s really frustrating having things change all the time.

I am now fifteen and the middle of three sisters. I am the only one in the family with alopecia. Most of the time I am OK with it but it is really hard sometimes wishing I had hair. When people first meet me I know that they are wondering why I don’t have hair.

I have sailed for 10 years and competed in four National Championships in the International Optimist and International Cadet classes. I also competed in the Tasmanian Schools Teams Racing competition and last year was invited to participate in the Australian Schools Teams Racing National Title. I have also competed in several SB20 national championship events.

Sailing is a sport in which females and males compete against each other. It requires a lot of preparation and interaction amongst all competitors. When I started competing at interstate regattas, where competitors, officials, and family members did not know about my alopecia it was initially quite difficult. I had to learn that my alopecia would make me feel worse if I missed out on things trying to hide it. My family and I find it a lot easier if we explain my alopecia so other people understand why I am like this, how it does not affect my ability to compete to a high standard, or my enjoyment and participation in activities. I feel like I have raised awareness of alopecia within this sport and will continue to do so. When people see I am comfortable I think it makes them comfortable.

I regularly volunteer with the Sailability program at a nearby yacht club to support disabled people with their weekly sailing. I am also a junior committee member at the Sandy Bay Sailing Club and have recently completed my assistant instructor qualification. I teach and support younger children in learning sailing. My alopecia is sometimes a point of curiosity to younger children. It is something I have to be brave about when they ask questions or notice that about me. Hopefully, when they meet other people with alopecia it will help them to accept them more easily.

I am thankful for the support of AAAF to assist with coaching costs from the Sponsorship. I am training to compete in some important regattas and the sponsorship is assisting me to access more training opportunities.

Michelle Law’s Story.

When I was diagnosed with alopecia areata at age 13, it was a very sudden life shift. I went from having long, thick hair to being bald within a couple of months, which made navigating high school particularly tricky. Developing alopecia at that formative age impacted my identity, and self-esteem, and instilled a lot of anxiety around social activities and sports.  

Now, I’m 32 and my alopecia has shifted and changed over the years, as it tends to do! I’ve had my hair grow back completely, then become sparse and patchy, to then growing back and falling out all over again. The past decade has been more consistent; right now I’m bald and have lost my eyebrows. Along the way I’ve tried many different treatments – from steroids to T-Cell inhibitors – that have been successful to varying degrees. With age, I’ve come to peace with how unpredictable alopecia is, and don’t take any medication for it. 

Having alopecia has definitely influenced my worldview, which in turn has influenced my working life. Personally, it’s taught me to develop a great sense of humour, to remember that beauty is skin deep, and to have greater sympathy for others and their internal struggles. Professionally, it’s inspired speeches about alopecia and TV projects like my SBS series, Homecoming Queens. 

I think having alopecia teaches you to be resilient, adaptive, and fearless. It’s also an ever-evolving journey. There are days when I love having alopecia (drying off after the shower is so easy!), where I miss having hair (winter is freezing!), and sometimes find it utterly exhausting (having to explain what alopecia is to new people). It’s been amazing having more public figures speaking about their alopecia, but there’s still a long way to go.

I’m excited to create more visibility and conversations around alopecia through the AAAF’s sponsorship program. I’ll be undertaking six months of horse-riding lessons, something I’ve always wanted to do. Horse-riding can be such a peaceful yet powerful experience, and horses are such empathetic creatures. I’m looking forward to the new life skills I’ll pick up along the way and can’t wait to keep everyone posted.

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