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.

Brigette’s Story.

My name is Brigette Lucas, I am 34 years young and I have an autoimmune condition called Alopecia Areata.

My friend in High School noticed that I always had hair collecting on my jumper, like the way a cat or dog’s hair always sticks to your clothes, but in my case, it was my human bio hair sticking to my school jumper. I didn’t think much of it at the time; I had so much hair that a little shedding was okay.

It wasn’t until I was 19 years old, after completing High School and when I’d moved from Rural NSW to Sydney, that my hair rapidly started to thin on my head. I found it hard to cover the hair loss and although social media existed, we didn’t have these little pockets of life where women with hairloss existed and shared their wig reviews, or head scarf tutorials, or just someone else existed with Alopecia. I had no friends losing hair, I talked with my Doc and we got a consultation booked with a Dermatologist.

I was diagnosed with Alopecia Areata.

At the time I didn’t even know what that meant… I was, or felt, very alone, scared and confused. I remember asking the doctor to write the word down because I thought he was using Dr lingo or Latin.

My journey has been long and it hasn’t been a quick, “I’m okay now” not for me, or for anyone just joining this community. I’ve grown with Alopecia. I used to feel that it took my identity and that it defined me… but now I think it’s just an aspect of me.

I like to remind myself that I am more than my hair loss; I’m more than my wig, or my turban, or my balding head and you are too.

So with years of learning, the hurt, the anger, the sadness, the why me?… I’ve decided to let it all go. It crops up every now and then and catches me off guard. I cry about it. Talk to friends about it and then return to letting it go as best as I can.

I’ve found that with my body getting older, it hurts in places… I know I’m only 34 years young, remember? But I’ve decided to take up physical activity to alleviate some of the pain. I’ve started pilates. It has so many elements of dance, which is something I did as a young girl. My body is really excited for the challenge and to be moving again.

I can’t wait to feel good in my bones.

Talk to you all soon about it

Brigette Lucas Xx

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.

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”

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”

A letter to my alopecia family

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

My Alopecia journey in the last year:

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

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

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

Continue reading “A letter to my alopecia family”

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