Victoria Gandera’s story and sponsorship.

When my Mum first told me that I had gotten the scholarship for my music learning I was so happy, and I was filled with excitement. This scholarship really helped me with my music learning this year because now I can do my singing exam for grades 3 and 4.

In the year 2020, during the first months of the pandemic, I started learning to sing and that was when I had my first Zoom lessons. When I sing, I can relax, and I feel like I don’t need to stress about anything and everything.

I really enjoy singing because I can increase my skills and my techniques to get better and better. I really love singing and I put in a lot of practice to get good at this skill. When I look back at videos of me singing my first ever song I’ve learned, I feel like I have improved so much since then and that all my skills and techniques that I have kept in mind, have helped me get my singing to be much better and well. I am so glad I have gotten that scholarship. My life wouldn’t be the same without music and singing.

The only reason I can do the two grades is the money from the scholarship, which has helped me with my lessons and has made it so that I could learn so much more. When I sing, I can just enjoy the moment.

My mum recorded my performance at the recital, which was organised really quickly. We have helped to prepare to program with the AAAF logo on it and we did those cute tickets, that said that everyone was VIP at our recital. It was the best day and even though I was a bit anxious at the beginning, I enjoyed it a lot.

Just like Victoria, we support many others 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.

Walk in my shoes, by Jo.

The word “alopecia” means hair loss. Alopecia Areata is an auto-immune disease that results in hair loss on the scalp and elsewhere on the body. It can range from small, individual smooth patches of hair loss, to total loss of all hair on the body – including ear and nose hair. Alopecia Areata is not uncommon, and current estimates suggest that 2% of the population will be affected by the condition at some point in their lifetime1. Alopecia Areata can be a lifelong condition, and can deeply affect self-image, self-esteem, confidence, and even mental health. But there is hope. Jo shares her personal and moving story.

EARLY DAYS

One day at work in July 2019, a friend asked me if I had burnt my hair with my hair straightener. She noticed a small 20 cent sized patch of missing hair. I had never noticed it. I saw my GP who referred me to a dermatologist who diagnosed me with Alopecia Areata (AA). Alopecia was definitely something I had heard of. I always assumed Alopecia was the complete loss of hair and not small circle patches.

Rapidly, that 1 small patch transformed into an AA ophiasis pattern (a unique pattern of hair loss, where the hair around the entire outside of my head fell out). Losing my hair and identity was incredibly traumatising and upsetting. I had no history of AA and prided myself on how fit, active and healthy I was. As I have now learned, AA is an autoimmune condition and can impact you at any age and health status.

Despite being a very confident person, I only told my partner, parents, and brother about my condition. I was embarrassed, fearful, and sad that I no longer looked like ‘me’ anymore. The one blessing of COVID-19 was I didn’t have to leave home and answer people’s questions about my hair.

THE BREAKTHROUGH

AA is a hard illness to sit within yourself. There is no cure and not all treatments work for everyone. Unfortunately for me, AA ophiasis pattern is very rare and also very resistant to treatment.

I feel very lucky to have a family who works in the medical field so discussing treatment options and medication came naturally. I joined AAAF (Australia Alopecia Areata Foundation) for support, read medical journal articles on new treatments, spoke to my medical team, and joined other support networks.

As a psychologist, the strategies I ask my clients to use, I had to apply to myself included deep breathing, mindfulness, grounding, self-acceptance, and rejection of traditional beauty standards. I am grateful that I know my partner and family love me no matter what. I feel that having their support also helped me to be brave. There were lots of nights I laid awake feeling anxious and wondering “what if I lose all my hair?” “what if I am like this forever?”.

After 2 years of treatment which included- painful injections, an intense steroid medication, and very expensive autoimmune suppressant medication, I have had some hair re-growth. In April 2021, I relapsed and some new patches formed with incredibly rapid hair loss.

I also started wearing wigs which was another journey in itself. The anxiety of “what if people notice I am wearing a wig and ask me about it?” is huge and one I still have not faced. Other than my family, I have told no one I wear a wig. I still haven’t come to terms with that in myself.

In this picture of me, I was in “remission” and only had small patches easy to cover with my long hair sections. Flares and recurrence can happen at any time, so this disease never leaves me completely and I need to manage my way through the ups and downs.

REFERENCE

AND TODAY

The financial burden I have carried from multiple treatments, expensive medication, and wigs (none is subsidised) is approximately $15,000 to date. I was fortunate that I have good health literacy, family support, and financial stability to try to fight my AA.

Today I have done a lot of work to accept AA in myself and what it means for me moving forwards. In the morning I take my medication, put my wig on and go about my day as a psychologist. I have to see my dermatologist regularly to manage my hair loss. I often remind myself that AA is not my fault and I did not choose this. I have made peace with my condition and know my worth is not defined by my hair or lack thereof.

1. Australia Alopecia Areata Foundation. About Alopecia Areata. About Alopecia Areata | Australia Alopecia Areata Foundation (aaaf.org.au). Accessed 20/01/2022

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!

Advice from the community

Hello, dear Alopecia family. We have spent some time collecting advice from our beloved community, so you could access our ultimate compilation of advice.

Some advice has been edited to allow us to feature each person and to create an enjoyable reading:

Be proud of yourself and everything about you including your bald head, but cover it up when in the sun or when cold. It’s ok to hide if you need privacy or aren’t up for having your uniqueness on display at that moment.

Alana

There is always someone worse off than you. You have people who love you and you can achieve anything you want. I remember as a little girl my prayers weren’t for me but, they were for people worse off. In the long run, it’s devastating not having hair, but it’s only hair.

-Claudia

Never hide, you will only hurt yourself by pretending you’re something you’re not. I’m not saying don’t wear wigs; do what makes you comfortable, but don’t be ashamed or embarrassed, genuine people will be kind and the others don’t matter.

-Chloe

Acceptance is the key to living a happy, healthy, and fulfilling life.

Acceptance is gained differently for different individuals. Some learn peace through yoga and meditation, some need friends and family support, and others may benefit from counseling.

-Linda

My advice to anyone living with Alopecia is to be open about it. The amount of
people who have told me about their alopecia or a family member because I
openly talking about my wigs or because I take them off in front of people has amazed me.
The more open you can be, the more you will find yourself comfortable with
your own hair situation and inspire others to open up.

-Corinne

Be Bold,
Be Bald,
We are all different and that is beautiful.
Please accept yourself and remember your awesomeness regardless.
Learn to love yourself and follow your dreams.
Smile and be happy.

– Pauline

Learn to love yourself as you are and talk about how you are feeling. It may take time to come to terms with your alopecia, and some days you may feel sorry for yourself, but that’s ok. Above all, remember your hair loss does not dictate how you can approach life. Breathe, relax and share in all the beauty around you.

-Bridgette

Practice kindness to yourself, celebrate your differences and uniqueness. Surround yourself a positive, inclusive and supportive community. Acknowledge feelings, don’t try to hide from them. You are beautiful, you are strong and you’ve got this

– Zoe

Do what you feel is right for you and believe in yourself.

– Airlee

Wake up each morning and know that you are beautiful with or without hair.

-Sienna

Own it, take the power from anyone who tries to put you down, because bald is beautiful.

-Kayla

Smile at everyone you meet, then you will always be beautiful

-Michelle

Improve what you can change and learn to accept what you can’t.
You only live once, make the most of it!

-Anne.

Accept that some days you will feel fine with no hair, others you will feel freaky.
Focus on the positives whenever you can – no waxing, shaving, hair removal cream, no hairdressing salons (I use to hate reading magazines and doing a small talk at the hairdressers – haha) no grey hair, a 5 min shower, and the ability to change your style and color at any time!
Have your explanation, and various versions of it ready, so you are comfortable when other people mention your wig or no hair. (Have a version for kids, work colleagues, friends, etc
I used to worry about upsetting people, making them feel awkward when they find out I have no hair…

– Don’t –

Just explain it confidently and that puts them and you at ease.

-Helen

The first thing you are going to need is a strong support system. It is a rough emotional ride and there’s, unfortunately, no book out yet called “So you’ve just been diagnosed with Alopecia”. You may want to isolate yourself but what you need to do is find other people who have this condition and take your Mum or a trusted Best Friend with you. Find a support group in your town or city or start chatting online.
Start slow and try to learn as much as you can about different types of eyebrow wigs, eyelashes, eyelashes, tattoos, and wigs as there are many styles such as monofilament, human, synthetic, virgin, suction, etc! You may decide you don’t want to replicate what you looked like previously and are happy to be bold and brave and out there.

Being in denial is also unhelpful for your wellbeing; blocking out your condition and how you feel about it with any substances is going to do a lot of damage in the long run and it probably won’t help you to grow your hair back.

Be prepared for the unexpected when you tell someone special because others’ reactions can really impact your mental health.

In hindsight, what I can tell you now, is that it’s important to get to a point of acceptance as quickly and as healthily as you can. This happened to you but it doesn’t have to define you. Find out what makes you happy and continue to do those things with people you love. For me, it’s going fishing on the beach, and I sure could use a hat with hair for that!

-Tamara

Photos taken from our 2021 camps.

Access the PDF on advice from the community here.

View the advice slideshow below:

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

Alopecia Areata Awareness Week 2019 Recap

Alopecia Areata Awareness Week ran this year from November 9th to 17th. This week brings our community together to connect and support each other. It is also a chance to inform, educate and celebrate our differences.

The Variety Alopecia Areata Adventure Camp

This special week kicked off with our annual camp for kids with Alopecia Areata.
Kids from every state in Australia came to the Gold Coast for this amazing weekend. We held one day of thrilling adventures at Dreamworld Theme Park. Our second day featured self-confidence inspiring sports challenges at BLK Performance Centre.

Continue reading “Alopecia Areata Awareness Week 2019 Recap”

AAAdventure Camp 2018

Alopecia Awareness Week 2018 was huge! We had so many great projects launch, announcements of upcoming programs and great events all over Australia. But the 2018 AAAdventure Camp was definitely one of the highlights. Check out this great video sharing some of the wonderful things we got up to!

Hair Donation Hero – Jocelyn

20180504_140047[1]My name is Jocelyn Montecinos and I am currently 21 years old. I have Chilean background and I have been playing basketball since age 4. In 2016-2017, I went to America to play College basketball but I had to put that on hold as I got injured.  I currently have my part-time job and my side job which is based on a hobby of mine, making handmade jewellery and other craft products.

I first heard about the hair donation program after I looked up online Australian hair donation places and AAAF popped up.

Continue reading “Hair Donation Hero – Jocelyn”

WA Boys Weekend Recap

Eagle Bay Boys Weekend 16-18 March

In March 2018, AAAF ran our first event just for boys with Alopecia Areata – a weekend camp in WA. Hosted by Greg O’Rourke, the WA AAAF Branch Manager, at his holiday home in Eagle Bay, three hours south of Perth, the camp was attended by six boys aged nine to fourteen.

_20180318_085954
(Left to Right: Greg, James, Cam, Carlo)

Some of their parents also attended, along with other members of the AAAF team – Support Ambassadors James Miller and Cam O’Rourke  and Carlo Napolitano. Carlo and James flew in from Sydney on the Friday evening especially for this camp.

Continue reading “WA Boys Weekend Recap”

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