Resources for Parents
Here's everything you need to know when your child has alopecia areata
Alopecia Areata affects the whole family
Parenting a child with Alopecia Areata can introduce new challenges. It is a life changing condition and it does impact the whole family. AAAF is here to help. We encourage you to reach out and use the resources at hand as a guide. How your family’s journey evolves will be influenced by many factors. Remember there is no right or wrong way – there is just your families’ way.
Most children, and especially the very young, will take their reaction cues to the condition from those around them. If you’re upset, distraught, fearful of the condition, they will pick up on this anxiety. This does not mean that you ignore or repress your own feelings of loss, sorrow, and anger when you are trying to cope.
Most children, and especially the very young, will take their reaction cues to the condition from those around them. If you’re upset, distraught, fearful of the condition, they will pick up on this anxiety. This does not mean that you ignore or repress your own feelings of loss, sorrow, and anger when you are trying to cope.
Working through these feelings is a vital part of the process of coming to terms with this condition. It is also very normal for parents to experience feelings of guilt about somehow being responsible for your child’s hair loss. However, children with Alopecia Areata don’t blame their parents, and there is no research proving Alopecia Areata is ’caused’ by anything you could have done.
Whether newly diagnosed or have been living with Alopecia Areata for some time, this information pack provides everything you need in one place. It includes useful information, ideas and advice to help you and your family.
Whether newly diagnosed or have been living with Alopecia Areata for some time, this information pack provides everything you need in one place. It includes useful information, ideas and advice to help you and your family.
Looking for something in particular?
FAQ
Of course you have questions at this time… these are answers to some of the most common questions we hear from parents and caregivers of those recently diagnosed with Alopecia Areata.
Our community has heard it all. The comments that come up most often as hurtful, even when well-intentioned:
“It’s just hair”
“At least it’s not cancer”
“At least you save on haircuts and shampoo”
“At least you’re a boy, not a girl”
“I know someone who has cancer too”
Unsolicited advice about how to grow hair back
As one member explained: “Comments like ‘at least you save on haircuts and shampoo,’ or ‘at least it’s not cancer,’ even when meant kindly, can feel dismissive of a very real loss.”
Is it okay to ask questions?
Yes. Curiosity is welcome, and asking is how understanding grows. What matters is that you listen to the answer, and lead with kindness. If anything we encourage it; making it an open conversation removes the taboo and stigma.
“It’s just hair”
“At least it’s not cancer”
“At least you save on haircuts and shampoo”
“At least you’re a boy, not a girl”
“I know someone who has cancer too”
Unsolicited advice about how to grow hair back
As one member explained: “Comments like ‘at least you save on haircuts and shampoo,’ or ‘at least it’s not cancer,’ even when meant kindly, can feel dismissive of a very real loss.”
Is it okay to ask questions?
Yes. Curiosity is welcome, and asking is how understanding grows. What matters is that you listen to the answer, and lead with kindness. If anything we encourage it; making it an open conversation removes the taboo and stigma.
To be seen and believed. Not solutions, not silver linings. Just the space to feel how they feel, and people around them who understand that what they say matters.
No. Alopecia Areata is not caused by parenting, environment, or anything a family did or didn’t do.
Significantly. Children with alopecia often face bullying and social difficulties that adults around them can underestimate. As one parent shared: “No one chooses it. Children can be so cruel. My daughter has been bullied for years about something she can’t control.” The comparison one parent offered is a useful one: “If you don’t want to be picked on for having red hair, she doesn’t want to be picked on for having no hair.”
AAAF runs school education programs specifically to help create understanding and reduce stigma for children with Alopecia Areata.
AAAF runs school education programs specifically to help create understanding and reduce stigma for children with Alopecia Areata.
Not yet. Research is ongoing and AAAF actively funds and supports studies into new treatments, working alongside some of the world’s leading dermatologists. Always consult your healthcare professional about what may be appropriate for you.
Both Baricitinib and Ritlecitinib have received TGA approval for alopecia areata in Australia. However, neither is currently subsidised through the Pharmaceutical Benefits Scheme (PBS), which means out-of-pocket costs can be significant. AAAF continues to advocate for PBS listing to improve access for Australians. Speak to your dermatologist about whether a JAK inhibitor may be appropriate for you and what access options are currently available.
As with any medication, JAK inhibitors carry risks and these should be discussed carefully with your doctor. Regulatory agencies including the TGA have issued warnings advising cautious use for people with a history of cardiovascular disease, increased cancer risk, or those aged 65 and above.
It is worth noting that much of the safety data comes from studies on rheumatoid arthritis patients, who differ from the alopecia areata community in age profile and other health factors. Research into JAK inhibitor safety specific to alopecia areata is ongoing.
A warning does not mean a drug is inappropriate. It means the decision requires a thorough conversation between you and your healthcare provider, taking your individual circumstances and medical history into account.
As with any medication, JAK inhibitors carry risks and these should be discussed carefully with your doctor. Regulatory agencies including the TGA have issued warnings advising cautious use for people with a history of cardiovascular disease, increased cancer risk, or those aged 65 and above.
It is worth noting that much of the safety data comes from studies on rheumatoid arthritis patients, who differ from the alopecia areata community in age profile and other health factors. Research into JAK inhibitor safety specific to alopecia areata is ongoing.
A warning does not mean a drug is inappropriate. It means the decision requires a thorough conversation between you and your healthcare provider, taking your individual circumstances and medical history into account.
Resources
Parents Pack
A tool for you created to give you the resources to assist your children on their journey.
School Pack
Designed to help educators introduce Alopecia Areata into the classroom.
Alopecia, Teens and Mental Health
Knowing the signs, how to start a conversation and where you can get support can change the lives of young people going through hard times.
The Best Friends Storybook
A story about Alopecia and Friendship.
Being a Friend Colouring book
An activity book that also gives your child insights on what they’re experiencing.
Support for Family and Friends
A resource guide built for those in your inner circle to help them understand what you need and that mentioning Alopecia is not off limits.
Our Programs
As a foundation we run multiple programs to be involved in…
Our Programs
Sponsorships
This Sponsorship Program provides financial support for individuals and families living with Alopecia Areata, wanting to undertake skill development and participation in activities.
Our Programs
AAAdventure Camps
A super fun weekend, filled with memorable experiences, and a fantastic opportunity to meet other kids with Alopecia Areata. Plus, it’s a chance to have an absolute blast!
Our Programs
Grant a Wig
AAAF’s Grant A Wig for Kids Program provides grants which support children with Alopecia Areata and their families.
Peer and Mental Health Support Resources
I’m looking for Peer & Mental Health Support
Alopecia Areata… it’s life changing, but you are never alone. Here we’ve curated a collection of resources to make the more difficult days easier and have them occur less often. Many of our community members learn to love their Alopecia Areata. On this page find:
+ Mind body Mindfulness Practices,
+ Tips and advice for the bad days,
+ Community Support Networks,
+ Mental health support networks,
+ Mind body Mindfulness Practices,
+ Tips and advice for the bad days,
+ Community Support Networks,
+ Mental health support networks,
Get Involved
I’d like to get involved
Join our mission to support, educate, and advocate for the alopecia areata community. Every contribution makes a meaningful impact. Here you’ll find:
+ How to individually volunteer or become a corporate sponsor,
+ How to fundraise,
+ How to get involved in donating hair,
+ How to individually volunteer or become a corporate sponsor,
+ How to fundraise,
+ How to get involved in donating hair,
Donate
Make a Donation
Everything AAAF does is community funded. No government support, no corporate backing. If this community has helped you, or you want to help others find it, your donation goes directly to the work that matters: support, education, and research.
'No Hair, We Care' Packs
‘No Hair, We Care’ packs are a curated personalised pack filled with items to support one living with Alopecia Areata.
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No Hair We Care Package – Adult
Once-off purchase; includes headwear, skincare, books, DVDs, makeup, jewellery, games and more, plus support resources. Limited to one pack per person with alopecia; contents subject to change. Not sold outside Australia. -
No Hair We Care Package – Teen
Once-off purchase; includes headwear, skincare, books, DVDs, makeup, jewellery, games and more, plus support resources. Limited to one pack per person with alopecia; contents subject to change. Not sold outside Australia. -
No Hair We Care Package – Kids
Once-off purchase; includes headwear, skincare, books, DVDs, makeup, jewellery, games and more, plus support resources. Limited to one pack per person with alopecia; contents subject to change. Not sold outside Australia.
