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!

Bren’s Alopecia Story.

Bren is a biologist that has lived most of her life with alopecia. She started losing her hair when she was five years old, all while she was going through a very rough moment with her family, but even when that was over, the hair loss was not. Bren tells us a bit about her journey; wigs, revealing her hair loss to coworkers, love, acceptance, and more.

This is Bren’s alopecia story.

Emma’s Alopecia Story

Hi, my name is Emma, and I was diagnosed with Alopecia Areata just before my 14th birthday.

My hair had always been perfect until one morning I woke up and got in the car to drive to school and mum asked me what I had done with my hair. At this stage, it was no more than about 5mm of hair missing from the front of my hairline. The next day it was even bigger, about the size of a 20-cent coin. This is when we decided to book an appointment with the dermatologists. We were extremely lucky, and it turned out they had a cancelation that week.

It was 5 days after the initial piece of hair fell out when I was diagnosed with Alopecia Areata. By this point, I had already lost about a 1/8th of my hair.

We instantly started steroid injections into my scalp, and they started to work. Over the course of about two weeks, I continued to lose hair rapidly until over a quarter of my head was bald and my hair had thinned drastically. At this point, we were told that I was most likely going to lose all my hair and that we should start looking into wigs.

One week later, I shaved what was left of my hair and donated it to help others with alopecia.

My hair loss slowed right down, and it eventually stopped. After a few months, I had some hair regrowth on my head. When things finally looked like they were getting better I suddenly lost all my eyebrows over a period of 3 days. This was exceptionally traumatic. We turned to henna to create the illusions of eyebrows for a few months before they eventually began to grow back. While I still have bald patches on both my head and my eyebrows, I have hope that one day they might grow back.

Emma is a very talented dancer that has been training for most of her life. She also is one of our recipients of the AAAF gold level Sponsorship Program which has allowed her to pursue her dancing. For more information about the sponsorship program click here.

Christine’s Story (3 months check-in).

Since making exercise a priority I’ve noticed changes in my mental health. I try to exercise most days, and this helps me feel strong physically and mentally, it releases stress and produces endorphins leaving me feeling happier and giving me more energy. When I feel good mentally, I cope with my alopecia better. If I don’t exercise for a few days, I feel tired, flat, and have low self-esteem. Self-deprecating phrases and words enter my mind, and it is hard to ward them away. 

Since commencing regular exercise and making it a daily priority I’ve realised I enjoy a challenge. I often shied away from challenging feelings and circumstances, thinking if I didn’t face these things life might be easier. However, the more I exercise and the stronger I feel, I have greater clarity in my mind allowing me to reframe my thinking about challenges. 

Three months ago I was lucky to be awarded a sponsorship with the Australian Alopecia Areata Foundation (AAAF) and it has helped fund my training and given me an extra boost to dig deep with my commitment to exercise. As a result, two months ago I decided to sign up for my first annual challenge that Mum’s On A Mission (MOAM) hosts. I’ve been a member of MOAM for a few years now, attending their exercise classes regularly. However, I had never previously joined the annual challenges they host due to fear. Fear of failing, fear of letting people down, fear of letting myself down, fear of letting people in, fear of people learning I had alopecia and that they might see and think of me differently. The 8-week challenge this year was aptly named “The Breakthrough” and it certainly lived up to its name. It involved 8 weeks of education sessions on training styles, nutrition, heart rate zones, recovery, and facing your fears. We also had to complete weekly exercise challenges like stair climbs, bolt push-ups, inchworms, frog squats, planks, and splits. All of this is done in teams of 3 people. 

I dedicated the 8 weeks, alongside my teammates, to facing my fears. I faced each week’s challenges, digging deep to learn and understand why I had been fearful of certain things and what might happen if I decided to acknowledge these fears and stand up to them. I’ve cried, I’ve had injuries, I’ve had successes and failures. I made new friendships and I faced my fears. I feel proud and I feel good. Yes, I have alopecia, yes, I wear a wig when I train, yes, I feel self-conscious about it, but that is ok. Vulnerability is ok. And from consciously accepting vulnerability, awareness emerged. And from awareness, I was able to work on building strength and self-acceptance within myself.

I feel grateful to AAAF for providing me with this opportunity to push myself out of my comfort zone. I’ve pushed myself to train more, sign up for the 8-week challenge, and speak about my alopecia. I don’t shout it from the rooftops, but I don’t shy away from it anymore. I welcome questions people have about alopecia and questions about my experience with it. I use it as an opportunity to create awareness of the disease, provide information and clarity on what it means, and share my experience. I am not sick. I’m not sure if my hair will ever grow back. I am ok with having alopecia. Please don’t feel shy about asking me about it because I’m no longer shy about talking about it.

Alex’s Sponsorship Update 2

My Bridgeneering lessons are finished and it was really really super great.  There was nothing about it that I didn’t like – the whole thing was the best.  If I could make one of the bridges in real life, I would make the Tower Bridge.  It’s a bascule and suspension bridge.  That means it has parts that go up and down like a drawbridge.  I also made the Story Bridge that’s a cantilever bridge; the Sydney Harbour Bridge which is an arch bridge; and a beam bridge.  I think the bridge we go over to Redcliffe is a beam bridge – it’s long and flat.

For the beam bridge, it was so long it went from one wall of the classroom to the other and the whole class worked on it together.  For the other bridges, we worked in pairs.  Everyone there was really kind and funny and everyone just love building bridges so we all worked really well together.  We all liked the same things as each other so everyone got on really well.

My favourite person was the teacher, Justin.  He knows so many interesting things and I just love learning from him.

When I grow up I want to design and build bridges but I also want to do all the other types of engineering too!  Thanks AAAF for sending me to Bridgeneering!

Brows, Lashes, and Alopecia

Did you know there are many types of alopecia areata? Each type has a unique pattern of hair loss. You may have seen that some people with alopecia range from just a few patches to having no body hair at all. This guide will help you understand why that is and attempt to answer the common question of “how much hair will I lose?” 

If you have AA and are wondering “will I lose my eyebrows and eyelashes?” like so many things to do with AA, there’s no easy answer to this question. You could lose them very quickly, or you may not lose them. Let’s have a look at why that is in this quick guide to brows, lashes, and alopecia areata.

How Alopecia Causes Hair Loss

Alopecia areata is an autoimmune disease. For unknown reasons, the immune system mistakenly recognizes your own body as the enemy and attacks it.  Alopecia areata -targets the hair follicles. This results in the hair follicle slowing down hair production. 

Alopecia areata typically presents as round patches of complete hair loss. These patches usually develop over a few weeks and may present as one patch or multiple patches. Alopecia areata does not lead to the inability to regrow hair. In many cases, hair loss isn’t permanent, and patches regrow over the course of several months.

However, for some individuals, alopecia areata will persist and hair may never regrow. For an even smaller percentage of people, alopecia areata will develop into other types of alopecia. Alopecia totalis involves the complete loss of hair on the scalp and Alopecia universalis involves the loss of hair on the scalp as well as the body (including eyelashes and eyebrows). 

To best understand how Alopecia Areata works across the different parts of your body, its important to  understand the phases of hair growth. The eyebrow growth cycle typically lasts about 4 months;the eyelash life cycle typically lasts 3 months; and the scalp hair’s growth cycle typically takes about 3-4 years to complete. You can read more about them here.

When Will Alopecia Affect Your Brows and Lashes?

It’s estimated that 50% of alopecia areata patients recover within 1 year of their diagnosis. On the other hand, 10% of alopecia areata patients will develop alopecia totalis or alopecia universalis.

Individuals with alopecia universalis experience the loss of all their body hair. That includes the hair on the scalp, body, and face. But there’s no particular timeline for this. Hair loss in some individuals occurs suddenly, in only a few days or weeks. For others, the spread of hair loss takes significantly longer.

If you already have alopecia areata and are starting to notice hair loss on other parts of your body, it’s a good idea to visit your doctor. While you may be losing hair for many reasons (such as age), if you are unsure about it, a trip to the doctor can be a good idea. 

Medication Options for Alopecia Universalis

Like alopecia areata, there is no cure for alopecia universalis. However, there are some treatments that have been effective in some individuals. When treating AA there are several medications that treat scalp hair loss that will also help with eyebrow and eyelash, however, some medications can be used to specifically target eyebrow or eyelash hair loss. For eyelashes and eyebrows specifically, you make consider the use of JAK creams for eyebrows and Latisse treating glaucoma, it can be used to grow and thicken eyelashes.

Did you know we keep a list of treatment options here? This is a general list and what medication is right for you will depend on the conversation you have with your doctor. They’ll take into consideration your age, medical history, and severity of your condition before recommending something that might work for you. 

Coping with the Loss of Brows and Lashes

Although alopecia areata doesn’t have any physical impact beyond hair loss, there’s no doubting the effect it can have on the emotional and mental wellbeing of individuals who have it. Alopecia areata can cause intense emotional distress, high levels of anxiety and depression, and personal, social, and work-related problems. 

When it comes to hair loss on the scalp, you might choose to use accessories such as hats, scarves and wigs. When it comes to brows and lashes, you also have a few options! 

Options might include 

  • No makeup/accessories 
  • Temporary tattooing 
  • Makeup (eyebrow stencils can help with this) 
  • Eyebrow wigs
  • Cosmetic eyeliner
  • Cosmetic eyebrow tattooing
  • Magnetic lashes (yes – you can use them even if you don’t have lashes). 
  • Temporary stick on eyebrow tattoos. You can view them here

A note on cosmetic eyebrow tattooing: Today’s techniques, like microblading, make it near impossible to tell the difference between real brows and tattooed ones. And because brows are so in right now, there’s also tons of makeup kits that help you create the illusion of full brows. False eyelashes can help satisfy your need for thick, curly lashes. There are professional salons that do lash extensions or you can purchase fake lashes at basically any chemist or beauty place. 

But perhaps the most important strategy for coping with the loss of lashes and brows is to find people who have similar experiences. You can read about other people’s stories here or find a local support group where you can share your thoughts and feelings in a safe and understanding space.

If you are losing your eyelashes or eyebrows, we highlight recommend watching our most popular video Alopecia Style: Eyelashes and Eyebrows (insert video below) https://www.youtube.com/watch?v=qX4dwUG67gs

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.

Continue reading “My Alopecia Journey – Kerri”

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.

Continue reading “Alopecia and the New School Year”

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.
Continue reading “Wigs – Where to start?”

Summer Reading List from Love, Alopecia

Summer is here. Can you hear it? It’s the sound of a deckchair, hammock or cozy couch calling your name. All you need it some ice tea and a good book.

This reading list isn’t about the newest releases or best sellers, but a collection of books which speak to us and share something meaningful about the experience of alopecia.

Do you have a book that helped you on your hair loss journey? Share it in the comments!

Continue reading “Summer Reading List from Love, Alopecia”

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