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.


How can I help my child at primary school to feel comfortable and confident while dealing with alopecia?
Being comfortable and confident with your alopecia at school can seem really hard at first, but information and awareness really does make a huge different. Helping their classmates understand what’s going on, and getting them answers to any questions they may have, will really help. Not only will their peers be more aware and less likely to ask questions that make her uncomfortable, it just generally builds a better, more respectful environment.

Hosting an alopecia information day at school can be great way to get more awareness out there, or you can look at sending a letter home to parents of kids. AAAF has a range of great resources, including a video aimed at explaining Alopecia Areata to primary aged kids and our School Pack which has a collection of sample lesson plans, letter templates for the school, and tips and techniques which you may find helpful.

If there is bullying going on, awareness and information about Alopecia Areata is even more important. Making it clear to everyone that it is a medical condition that can’t be prevented really does help to address bullying in my experiences. Most kids are aware that treating someone poorly because of a medical condition is not on.

If your child is interested in things like sport, music or other activities, encouraging them to pursue this is great. Finding things they love and are good at will help them make friends and feel more confident.


My daughter is getting at an age where she is going to start dating soon, but I’m worried she’ll have issues with boys not wanting to date her. What advice do you have?
The reality often is that kids with alopecia grow up very fast.

We’re very empathetic and very open to the differences of other people, because we understand exactly what that feels like.

No one can promise that everything will be smooth sailing – there will almost definitely be hurdles, because high school can be difficult for anyone. But in the long run, I think most people with alopecia I have used that experience and empathy to become better people, and the people around us pick up on that.

So, yes, there might be issues when the kids are in early high school, and not feeling popular can hurt, if that is her experience.

But people do grow up and they will see the things that really matter are how funny and how kind and how good a person is, not how they look. Realistically, any person who doesn’t want to date someone because of something so superficial as hair loss, then that’s not someone you want to be dating and it’s not someone you want your daughter dating. It will be okay.


What’s the one thing your parents did right?
Education is a big thing. My mum got very involved organising information for the school and arranging crazy hat days, and all of that helped to get the community involved and supportive and me feel like I wasn’t alone.

Getting involved with NAAF and getting involved with the support sessions was also amazing. There is nothing quite like meeting up with other kids who are in the same boat, or talking to people who have been exactly where we are now.

My mum used to make me these beautiful hats, and I loved them and would wear them all the time. It was such an important part of my relationship with alopecia to have this fashion statement, something that was really beautiful about it. Since then, fashion has become a huge way of how I relate to my alopecia and even how I feel about myself.
I know at the time she was devastated that she couldn’t do more to fix what was going on with me. It really got her down that she couldn’t solve this and make it better. That’s a quite normal thing for parents of kids with AA to feel, but I promise you – whatever you can do goes such a long way. Just knowing they’re there for you helps.


How can we get our kids to come to the place you are, where they feel confident and happy?
I was always taught to be comfortable in your own skin. You’ll have bad days, you’ll  struggle, but in time you’ll get to a place where you can accept what has happened and can share your story, and you’ll see how people react with love and respect for you.

You can encourage your kids by helping them get all the information they need, connecting them with other people with alopecia, getting resources from AAAF and keeping them doing the same things they did before they lost their hair. Encourage them to stay connected with the world, get the support systems they need, and give it time.


How can we help our kids to know they don’t have to keep it big secret?
It’s important to keep in mind that it can totally be secret. If they’re not ready, if they’re not comfortable, then you don’t have to be open about their alopecia publicly. You need to do what keeps you comfortable.

If there is a point where they do want to share, but they’re scared or anxious, or being held back from doing so, then that’s different. In that situation, just keep reminding them that you love them. Make sure they know that the people who matter won’t mind. There is resources at AAAF that can help you make this step, so you don’t have to do it all at once, and you don’t have to do it on your own.


If the JAK inhibitors had been available 10, 15 years ago, would you have taken then? And now, if it’s available in 2 years would you take it?

It’s hard to answer. Alopecia has taught me so much about life, about empathy, about hardship. It’s been such an important part of who I am, so I’m not sure if I would want to be without it.

A few years ago there was a news story that was trending that there was a cure for alopecia, and I’ve never felt more anxiety in my life. The idea of having to make that choice, and going through the process of “will it/wont it”, and how would I cope with hair after being without for so long – the whole idea was just very stressful for me.

I think with all treatment options it’s important to read and communicate with your kids to see what they want to do. They know themselves best, and you know them, so follow their lead and support their choices (under the guidance of a medical professional, of course).


How can siblings support their siblings with alopecia?
This is a great question. I grew up very close with my sibling and I think that support has been a huge factor in where I’m at today.

I think it’s important to keep in mind that your sibling might not always want to talk about their condition. Sometimes the greatest part about having close family and siblings is that you have the space to just ignore it for a while if you want to.

I think it’s just important to make sure they know that you love them regardless of what their hair is doing and that you’re always there for them if they need to talk.


We hope you enjoyed these answers and ideas from experts on living with Alopecia Areata. If you had a question that we haven’t covered here, or something you’d like to hear more about, feel welcome to comment below, or get in touch with us over on the AAAF website or visit us on Facebook.


Kokoda17 – Greg’s Story

Greg is AAAF’s Branch Manager in Western Australia. Over his many years with AAAF, he’s been a driven and passionate champion of Alopecia Awareness and support for people living with the condition.
His latest project, Kokoda17, is an awareness and fundraising challenge for himself and a team of other dedicated individuals from our community. On Sunday the 13th of August, they begin the journey of a lifetime – tacking the Kokoda Trail in Papua New Guinea. They’re taking on this 97km of rough terrain and poignant history to help improve the lives of people living with Alopecia Areata.

Already this amazing crew had met their first fundraising goal of $10,000 toward support and research into alopecia. They hope to reach the $15,000 mark before they return from this grueling trip. You can help them help kids and families living with alopecia by donating here.

We sat down with Greg during his preparation for this impressive journey, to discuss what inspired the idea and why he took up the challenge.

Continue reading “Kokoda17 – Greg’s Story”

Shea on Alopecia Treatments

“It has taken me a really long time to be okay with alopecia being a part of my life. But I still have days when I hate it. When my wig doesn’t go on properly or my eyebrows don’t go on properly or I just want to be like everybody else, to be able to just chuck my hair into a ponytail.”

Shea is one of AAAF’s Support Ambassadors. Here she shares her experiences with treatments for Alopecia Areata and her own personal journey with this condition.


*Keep in mind that this video contains some non-graphic discussion of medical procedures. Viewer discretion is advised.


The Tropical Challenge – Beating the Heat while living with Alopecia

alopecia-and-hot-weather-author-linseyBy Linsey

Living in the tropics and coping with alopecia has been an interesting challenge for me.

I grew up in Indonesia practically on the equator. It was hot, sticky and 100% humidity. When I first got a wig I still had quite a lot of hair on my head— hair that I was not ready to give up on or shave off. I was thirteen and I didn’t want anyone to know I was going bald. I was so ashamed. So I wore my wig on top of my hair, sometimes even to bed. I broke out into heat rash on my head and my face. My skin was not happy and neither was I.

Continue reading “The Tropical Challenge – Beating the Heat while living with Alopecia”

Bald Girl in the Dating World

A reflection of my journey, a bald girl in the dating world.

I am Bianca and I’m 41 and single.
Some time ago I shaved my head and started living my life as a bald woman with Alopecia. The grieving that followed that was indescribable.

Over here in my bubble I assumed I was no longer feminine, I felt ugly.

I looked in the mirror and was mortified at what was looking back at me, I no longer knew who I was. The image I had known as “me” for as long as I can remember was gone and something very different, something very confronting stared back at me. When I went out to bars and clubs, men and women stared at me, in fact whenever I left the house people stared at me. Continue reading “Bald Girl in the Dating World”

Taking the Plunge: Telling people about your Alopecia

There was a time in my life where I would’ve preferred to run 10 km in spandex through Melbourne CBD than tell any of my friends about having Alopecia. Luckily, as I got older, I realised that people probably wouldn’t act like I’d committed a mortal sin for having the audacity to get a chronic illness. It was a process. That being said, I’ve had some amazing experiences and some not as good experiences when telling friends about this condition. Whether you want to tell your whole school, someone at work, or a new friend or partner about your alopecia, it can feel pretty scary. But with the right preparation and the proper tools, it doesn’t have to be. Learn from my mistakes Young Padawan and stock up your arsenal of awareness weapons.  Continue reading “Taking the Plunge: Telling people about your Alopecia”

What NOT to say to someone with Alopecia

gemmaHi, I’m Gemma. I’m 22 years old and I’m a registered nurse. I first lost my hair last year when I was 21 and working at a nursing home. I’d worked at this nursing home for 2 years already so I was well known by all the residents. However, I soon discovered that sometimes elderly people say whatever they want without really thinking about it, which, let’s face it, if I had lived a whole life censoring myself in society, I’d stop trying when I was old too.

One day I was having a particularly emotionally hard day at work, and I decided to write a response to every comment that had been said to me since I started losing my hair, and created this list of things not to say to someone with alopecia.  Continue reading “What NOT to say to someone with Alopecia”

Beyond Brows – A Guide to Universalis

Alopecia Areata is never a smooth ride, but for those living with total or near total hair loss to the whole body (called Alopecia Areata Universalis) the condition can have extra hurdles. The loss of brows and lashes can be a blow to self-image and greatly effect self-esteem and confidence. Fortunately, there are many guides out there for how to manage these appearance issues with through makeup.   But body hair has a range of functions beyond appearance, and many alopecians find themselves surprised and unprepared for the ways universalis can affect them.

Never fear, my friends. Love, Alopecia has got your back. Drawing on many years of experience managing the weird, wonderful and oft overlooked side effects of all over hairlessness, we’ve created this super convenient list to help you, whether you’re new to the AU experience or an experienced veteran. Continue reading “Beyond Brows – A Guide to Universalis”

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