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.

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:

Young Kids and Alopecia Areata

Alopecia Areata can occur at any age. Did you know that it most often first presents during childhood?

Alopecia Areata is a complex condition. A lot of resources about it are very medical and difficult to understand. For very young kids and families supporting them, this can be a challenge. We’ve collected some of our best resources for helping young kids to understand alopecia. These resources can be helpful if a child has alopecia themselves, or if they have family or friends living with the condition.

Continue reading “Young Kids and Alopecia Areata”

Alopecia At School

Heading back to school is an exciting time. Whether you’re headed into a new year or a new school, it’s a time of a lot of change. For young people with Alopecia Areata, school can have some extra challenges and considerations, but there is a lot of support available. Here are some of our top tips for managing Alopecia Areata at school. For more ideas, we recommend checking out our School Pack or Teen Alopecia Support Group.

Continue reading “Alopecia At School”

Handling Questions – Alopecia Tips for Kids

Have you ever been asked a question about your alopecia? How did it make you feel?

Sometimes questions can be okay. Other times, it can be annoying or upsetting, and you may not want to answer.

Why do people ask questions about your hair?

Lots of people have Alopecia Areata. Yet some people don’t know much about this condition. Some people may have never even heard of it. People might ask about your hair because they don’t understand and are curious.

Sometimes, people think that the hair loss is caused by something else. They might ask specific questions, like “Do you have cancer?”. In this case, people might be asking because they feel worried about or concern for you.

Continue reading “Handling Questions – Alopecia Tips for Kids”

Appearance Diversity – Dimensions of Diversity

By AAAF President and Founder, Chel Campbell.

Diversity: Identifying and reflecting on each individual uniqueness and being able to recognise our own individual differences. Diversity is certainly a buzzword being thrown around lately, and it’s often used to address or add politeness to certain social groups. I talk regularly about supporting appearance diversity as one of my passions and drivers of being part of AAAF. But what does that actually mean?

The topic of diversity is more complex than I first thought. It goes far beyond the common diversity issues of gender, race, religion, and disability. Diversity runs much deeper than this and also comprises dimensions of diversity based on personalities, experiences, appearance, beliefs, and reactions to events.  When understanding this, it becomes easier for me to handle the everyday situations I am placed in with my son, who has been living with Alopecia Areata since early childhood.

Continue reading “Appearance Diversity – Dimensions of Diversity”

Ask the Experts – Young Adult Perspectives

As you may be aware, earlier this year AAAF was able to send two of our team as representatives to the National Alopecia Areata Foundation Annual Conference in Miami, Florida.

We’ve been able to bring back some fantastic ideas for new projects to bring our community here in Australia, some great information from the Ask the Experts session (find it here), and now are excited to be able to share from a session on a young adults perspectives on living with alopecia.

This session was hosted by an amazing panel of individuals in their early 20’s who have lived with alopecia through their childhood and teens. Individuals in the audience, most of them parents of kids with alopecia themselves, were able to ask questions and seek information based on the panels personal experience.

It was fantastic to see this exchange of information and perspective, but it was also really amazing how many of the questions that were asked were the same as those we receive daily at AAAF. In order to bring the amazing experience of being at the conference with over 600 other people with alopecia, we’ve taken extensive notes from this expert panel to bring to you.

Continue reading “Ask the Experts – Young Adult Perspectives”

Raising Kids with Alopecia (from ex-kid with Alopecia)

 When young kids and teenagers first develop Alopecia Areata, it affects the entire family.
 
It’s usually a highly emotional, stressful and even scary time. There are so many unknowns with this condition. Why does it happen? How it might develop? Will treatments even work?
 
That’s why AAAF exists. I’ve volunteered with AAAF for most of my adult life. First as a Youth Ambassador, then Support Ambassador and currently as Secretary. I’ve spoken with dozens of parents and kids trying to come to grips with this new diagnoses. Though their experiences are diverse, they’re all asking the same question: What do we do now?
 
A disclaimer before I get started:
I’ve never been a parent and I’ve never raised a child, alopecian or otherwise. I still don’t feel like a grown up. My Peter Pan Syndrome to get stronger every year. But I have had alopecia myself since I was very small and have gone through almost every form since.
 
I can’t tell you what it feels like to raise a kid that’s going through this. But I do know what it’s to be a kid trying to understand AA and what it will mean for my life. If you’re going through something similar, then it’s my hope that these four pieces of advice can help.
 
-Georgia, AAAF Secretary
1. Keep Calm.

Continue reading “Raising Kids with Alopecia (from ex-kid with Alopecia)”

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