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.

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Alopecia – Ask the Experts

Two representatives from AAAF were able to attend this year’s National Alopecia Areata Foundation Annual Conference in Miami, Florida. This event is one of the largest gatherings of people with AA in the world, and was a fantastic experience to see and speak with so many people living with condition from all across the world. One of the most attended sessions was an Ask the Experts session, where the AA community got to pitch our questions to a range of alopecia specialists, including researchers, dermatologists, and clinicians. The panel included Richard Long, Gabriela Nero, Maria Hordinsky, Brett King, and Natasha Mesinovska.

Our representatives collected the questions asked in the panel and took notes on the responses to bring them to you.

Continue reading “Alopecia – Ask the Experts”

Living with Alopecia – Linsey’s Story

My alopecia story started when I was a toddler. There are pictures of me with my fine, blonde hair all curly and cute—and then a patch of baldness.

Growing up I had patches on and off.

No one really talked about my bald patches; even my parents were pretty tight-lipped about it. Maybe because a doctor had said, ‘I would just grow out of it’. Well, I didn’t.

When I was twelve, I started to lose my hair in earnest. Continue reading “Living with Alopecia – Linsey’s Story”

Carlo Napolitano

Carlo Napolitano is the newest committee member to join the AAAF team. The former Head Coach of the Italian National Rugby team has had Alopecia Areata almost all of his life and attributes many of his personal successes to his experiences growing up with AA.

“Although it was tough growing up, I never used my Alopecia as an excuse to not achieve. I failed many times but I used the failures as a lesson on how not to do things. With or without hair we are all capable of success. Negative energy creates nothing, positive energy creates champions. Be a champion!!”

Continue reading “Carlo Napolitano”

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”

Self Love for Alopecians

“You can search throughout the entire universe for someone who is more deserving of your love and affection than you are yourself, and that person is not to be found anywhere. You yourself, as much as anybody in the entire universe deserve your love and affection.”

-Buddha

So, what is self-love, you ask. Self-love has become the latest super food for the soul but very few know what it really means.

The dictionary tells us;

Self-love | noun | Regard for one’s own well-being and happiness.

Now that can even seem vague and open to various interpretations. In fact, it’s taken me years to answer this question for myself. I’ve searched high and low, lived in Ashram’s, done six silent Vipassana retreats, travelled solo, lived alone in foreign countries, practiced many different techniques and approaches and I can say this, its discovery of a very different kind. It’s not an experience you are looking for, it’s a relationship with yourself. That can’t be found anywhere but within. Continue reading “Self Love for Alopecians”

On Puzzles

Everybody you meet has a puzzle.

Your puzzle is different to mine. Mine is different to yours. Mine may be really big and overwhelming and complicated. Yours may be small and for the most part simple, or vice versa.

These puzzles represent our emotional, mental and physical selves. Your wants and needs to survive. Your situation. Your history. Your future path.

It is your puzzle and yours alone.

 

For a really long time, I have tried to solve other people’s puzzles. Continue reading “On Puzzles”

AAAF Goes to NAAFCon2017

With AAAF South Australian Branch Manager Liz Bear.

  1. What’s your connection to Alopecia/AAAF?

I was first diagnosed with AA 34 years ago.  My eldest daughter also has AA as did my paternal grandfather.

  1. Tell us about the NAAF Conference

The NAAF Conference is held annually at various cities in the United States by the the National Alopecia Areata Foundation. People with AA and their families attend from all over the United States and some from Overseas.  This year it will be held in Miami, Florida.  During the 4 day conference, while different session are on during the day for attendees, NAAF organises a children’s camp so children with AA can meet others who are like them.  There can be around 500 attendees. Continue reading “AAAF Goes to NAAFCon2017”

Life with Alopecia – Charlotte’s story

This is a story with lots and up and downs and bumps along the way. This is the story of me with Alopecia. This story all starts in Year 3.

Year 3 was a very up and down year for me. This is where my Alopecia story begins. In about the middle of the year, very close to my birthday, I remember this very specific time when my mum was doing my hair in the morning for school and she saw a little patch. She said to my dad what is this doing here or add least something like that. My parents decided to take me to the doctors. The doctor said don’t worry about it, but my hair kept falling out and it was hard not to worry about it!  My parents decided to see a different doctor about it they recommended that I see a specialist about it. Continue reading “Life with Alopecia – Charlotte’s story”

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