Sheridan’s Story

When I was young my hair was my pride and joy. I received so many compliments on it… I was known as the girl with the long plait.

Then one day, I felt the hairdressers cold fingers against my scalp. It felt barer and more exposed than normal. She quickly ran to my mum and I knew something was wrong. I had a bald patch about the size of a 50-cent piece. One patch at a time, the emotional roller coaster of treatments began and I grew up very quickly. I was confused, unsure, scared, I felt different and my lack of confidence penetrated many aspects of my life. I hid my hair loss with bandanas and wigs.

I began treatment, but it didn’t work.

I fell into depression, resistance and avoidance. I lost my identity, but I was unaware, insisting, everything was fine, when I knew deep down, it was not.

Overtime, my alopecia areata progressed to totalis, and most recently universalis. 

Shortly after the last hairs in my head fell out, I began to challenge myself by practising yoga. I would feel slightly nervous the entire practice until we got to the challenging pose, then I would breathe through it and feel AMAZING after. This inspired me to begin studying yoga therapy, mindset work, subconscious programming, embodiment, Jungian psychology and mindfulness techniques. 

It turns out, my self doubt and fears related to what I looked like, had little to do with the strands of hair that were (or were not) on my body, but much to do with the level of self trust and self acceptance I had inside. 

Once I could grieve the appearance I no longer had and develop self love, the confidence began to radiate through me, and I felt grounded in my feminine, powerful yet humble, ‘I-can-do-anything -and-so-can-you’ attitude. 

Now I’m so grateful to AAAF for supporting me in my meditation practice through this sponsorship. 

Isabella’s Alopecia Story

My name is Isabella. I am 9 years old. I have had Alopecia since I was 3. 

I was born with a birth defect called gastroschisis. This means my organs were outside of my body when I was born and I needed surgery right away to save me

I have a poor immune system because of this and hair loss has become one of my main symptoms of it. I see my dermatologist every three months. I’m currently on different medications to help suppress my immune system and be able to grow my hair, which has been really good for me. 

Sometimes I feel really sad. My doctors think I might be developing Lupus and I have blood tests once a month. At the moment they can only help me treat the side effects until we can confirm my diagnosis. I am tired of having blood tests and taking tablets. 

I have always loved dancing. It makes me feel so happy even if my body is tired.

I started cheering this year. It is fast and so much fun. I am learning to tumble and have made a lot of friends. 

Thank you so much for reading me. 

Isabella

My daughter has Alopecia.

My daughter was diagnosed with alopecia 20 years ago.

She’d visited a friend in Queensland for the school holidays and the mother called to say she noticed spots of baldness on her head. It happened quickly as they were not there when she’d left home. I asked what shampoo was it as it was noticed hair washing. I thought it’s the brand. 

Over the next weeks the morning ponytail brushing revealed hair loss and when we went to our hairdresser, she mentioned it. 

This was a completely different recollection for me and my daughter.

I made a doctor’s appointment and we were referred to a dermatologist but had to wait months. They suggested a lotion that didn’t end up working. 

I felt useless and frustrated because our only option was the cancer clinic wig loan service, so that’s where we went next.

We found a wig that was suitable for an older person, but when we got home my daughter threw it across the room. It was never used. 

We found a Hip Hat and she wore that with a bandana, even up to her transition to high school. We had to notify all teachers that she was out of uniform due to a medical condition but often it was not considered. She was asked to remove her bandana and most of the time they weren’t kind about it. 

At about 14 my daughter decided on a wig. It meant shaving what hair was left to create a perfect one for her head. I felt enormous grief.

She has had a suction wig since then.

But since then there has been additional hair loss that’s been emotional and a financial challenge.

I’m grateful she’s found acceptance and love in her life. She’s empowered to share her experience and educate others. 

Right now, I think 20 years on were all in a good place. The confidence and beauty in my daughter inside and out just makes me proud.

If I could share a message for others it would be… 

If you are just starting this journey with your child I feel it’s easier now as there is so much more information and research. It’s important to consider the impact on siblings as they’re asked why does your sister/brother look like that. I talked to our daughter’s class. I hope we respected her wishes.

I had worked at DFAT and I was not allowed for head coverings other than religious reasons to use for a passport photo. I reached out to a former colleague that had alopecia and with his help my daughter’s passport photo was approved. It was situations like this that are an example of change that is now accepted. We were the first family to ask for an exemption for a different headcover due to a medical condition.

Quick message for the children reading…

Tell your parents/carer if you’re not comfortable with decisions other people are making for you. Speak up if you can.

Thomas’ Alopecia Story

My mum first noticed the little spots in my head when I was about four years old.  We went and saw a dermatologist and tried different treatments, but nothing really made that much difference, and back then it wasn’t really that much of a big deal.

In year six, big patches of my hair started to come out – it was ok at first – me and my friends would have a bit of a joke about it, but in year seven when I started high school things got worse.  It got to the point where I had more patches than hair and we had to make the tough decision to shave it off.

I went through a pretty tough time at school.

Not everyone knew why I had no hair and I felt like I was the only kid with the problem.  But Mum got in touch with Greg O’Rouke and the Alopecia Support Group and I got to go on my first camp.  Getting to meet other kids with the same issue, to hang out with guys like Carlo Napolitano made so much difference to how I felt.  I wasn’t alone and having no hair didn’t make any difference to who I was.

Being involved in sport makes a big difference to how I feel about myself.  Being able to compete and be on a team with mates who don’t care if I have hair or not is important. Finding a team that accepts you for your ability and not your appearance makes all the difference.

My hair grew back last year, but pretty much straight away it started to come out again.  I’ve shaved my head again – its easier and I’m in charge of it.  I was a bit nervous rocking in to my first training bald, but a few head rubs from the team later – no one cared – We just got on with training.  

Thomas is a recipient of the AAAF sponsorship program. If you would like to receive financial support for your dreams and hobbies, please visit our web page to apply.

Cath’s Alopecia Story

Meet Cath!   

We recently spoke with Cath from CMT Psychology and she shared a bit about herself and her alopecia story.

  • What are you reading or watching right now?
    • I’m watching Mare of Easttown and Superstore. I’ve just finished reading All Our Shimmering Skies by Trent Dalton. 
  • Who’s someone you admire or look up to?
    • I love Leigh Sales.
  • What’s something you want to learn?
    • I tried to learn French for years and still can’t speak it. I would like to try again one day!
  • What’s the bravest thing you’ve ever done?
    • Probably putting a picture of myself in my first wig on Facebook and “coming out” as having alopecia.
  • If you had 25 hours a day, how would you use your extra time?
    • I have a baby at home so the honest answer is sleep!

Tell us about your alopecia story!

At age 20, after a sunny day outdoors I noticed a tender spot on the top of my head. Closer inspection revealed a sunburnt bald patch about the size of a 20 cent piece. Shocked, I turned to my Dad to seek reassurance… was I imagining it? He glanced at the top of my head and stated very matter-of-factly… “yes you do have a bald patch.” (Dad isn’t one for mincing words).

What followed was a roller coaster of treatments and my hair falling out, growing back and then falling out again. Nearly 15 years later I’m comfortable with having alopecia areata. I shave the little hair I do have on my head (which is not very much). I wear wigs most of the time and feel most myself when I’m in one. This place of acceptance wasn’t easy to get to and there are still times when I feel anger, sadness or anxiety related to my bald head.

There are several things I learned along the way that I wish I had known earlier. I wish I had been more aware of the stories I was telling myself and the impact those were having on me. For example, I had some health issues (totally unrelated to alopecia) and began telling myself “Here we go again… more proof that my body doesn’t work properly… my body is defective”. This kind of self-critical thinking adds an extra layer of suffering on top of an already difficult situation. That doesn’t mean I think I should have forced myself into “positive thinking”. I just didn’t need to add to my suffering by beating myself over the head with self-criticism. 

Another thing I did that added to my suffering was to avoid social situations in the early days. I didn’t want to go to social events because I was scared people would notice my bald patches. Later, I was scared they would notice I was wearing a wig. While in the short-term, this eased my anxiety (because no one would notice my bald patches while I was sitting alone in my bedroom), it led to increased social isolation and made it a bigger deal when I had to go into social situations. The more I went out, the more I noticed that others didn’t really worry about my alopecia. It was a much bigger deal to me than it was to them! Afterall, “those who mind don’t matter and those who matter don’t mind” (I have often thought of this line throughout and Google tells me it was Dr Suess who said it – very wise).

I feel wary of giving advice to others going through this because we all receive far too much of it. Many well-meaning people will give lots of advice. It is so important to speak about it with people who make you feel heard, cared about and supported. It is okay to feel sadness, anger or any other emotion. Allowing myself to feel these difficult emotions and talking about it with supportive people was crucial to feeling at peace with my alopecia. 

Job Interviews with Alopecia Areata

Nervousness about an interview affects nearly everyone. But if you’re experiencing alopecia areata, you may feel like you have an added stressor around interviews.

You may be unsure what to wear, whether or not to tell your story, and what your interviewers will think. Preparing yourself for all of this will help you ace your interview, regardless of whether or not you choose to disclose your story.

Below, Sheridan Ruth, one of our community members shares her top 5 tips for job interviews with alopecia.

1. Research The Position and Company

This is one of the biggest mistakes people make when it comes to interviewing and it is particularly important if you are a little nervous about your alopecia areata.  Coming into the interview prepared and educated helps manage some of those pre interview jitters. 

You can start by learning more about the company, and also a bit about what your role would entail. Plus, the company’s motivations, their core values, and a bit about the company culture. I also recommend having a look at their HR policies to understand if there is a uniform requirement and if so, what this entails. Coming in prepared will help you feel more comfortable and confident. 

Not only will this make you more prepared than most candidates, it will give you a sense of whether or not you’re going to fit in and feel comfortable in the position. 

Bonus tip: On your resume, if you are a member of an Alopecia Support group like ours, you can write that down. This may open the conversation up easily, or they may even research Alopecia Areata beforehand as they might not be familiar with the term. 

2. Choose How to Dress

How you present yourself at your interview is important. Even if the place is business casual, make sure that you’re dressed professionally and appropriately for the interview (i.e. don’t show up in sweats or leggings – think a collared shirt and dress pants).

If you have alopecia areata, part of this is going to mean choosing what (if anything) you wear on your head. If a wig is what makes you feel most comfortable, then by all means wear it! But you don’t have to go that route if it’s not in your repertoire. You can play with hats and scarves, and going in without anything is also an option.

The point is to wear (or not wear) what’s going to make you feel most confident, which brings me to my next point.

3. Confidence is Key

Whether or not you decide to wear a wig, a head scarf, or go to the interview au naturel, your confidence is going to be key. Confidence literally shines through you for others to see, and the same can be said about a lack of confidence. That is, it’s obvious to the people in front of you when you don’t believe in yourself and your abilities.

Take some time to find your confidence before the interview and walk in there with the ability to recognize and communicate your unique set of skills  – which, has nothing to do with your hair, by the way.

Confidence-building could be in the form of reciting affirmations in the days leading up to the interview, practicing visualization techniques, or talking to someone in your support circle who makes you feel like the best version of you. You might also practice the interview with someone you trust, which gives you an opportunity to share your strengths and skills.

4. Consider Sharing Your Story

Besides working on that confidence prior to the interview, you might consider sharing your story and how it has made you who you are today. Of course, you’re under no obligation to tell them about your alopecia, but there are some creative ways to share it in a way that empowers you and highlights the strong person it makes you. 

When they ask about your strengths, you can talk about how you’ve coped with your alopecia and how that’s made you a stronger, more compassionate, and more self-loving and self-accepting individual. Working your alopecia into an answer to a question means you’re putting it out there. You won’t have to worry about when or how it comes up because you will have taken that into your own hands. 

If you decide to go this route, be prepared to answer follow up questions, but don’t make your alopecia the focus of the interview. You are more than your alopecia and that’s not what you’re bringing to the job. You can answer as little or as much as you like, you’re the boss. You can find resources on speaking about your alopecia here.

One of the follow up questions might be “are you sick?” You can answer no, I am not. You can reference or print off this fact sheet to help explain Alopecia Areata. 

Printing it out is a great idea in case you’re not comfortable talking about it, you can provide them with information to read. 

5. Ask Questions

While, yes, for the most part, you’re going to be the one put on the spot here, most interviewers also give you an opportunity to ask questions. Take that opportunity to show that you’ve done your homework. Asking questions that show you’ve done your research on the company puts you above and beyond other candidates, but it also shows that you’re curious and willing to learn.

This  is a great opportunity to show that you believe in yourself and that you have your own best interests at heart. Ask how they see you fitting into the company. If you’re concerned about your alopecia and uniform requirements, you might ask what the uniform requirements are (again, you don’t have to tell them about your alopecia). 

Additional Support

Job interviews can be nerve-racking as is, but your alopecia doesn’t need to add on any stress. Keep these 5 tips in mind and you’ll be well on your way to earning your seat at your dream job. 

If you still feel very emotional about your hair loss when speaking about it, working with support can help you take some of the charges out of the emotion so that you can rock the job interview process as the amazing, qualified person that you are! You can read more about support here

Disclaimer: The views and opinions expressed in this blog post do not necessarily reflect the opinion of AAAF.

2021 Sponsorship Program – AAAF and alopecia awareness ideas

Did you know AAAF has a sponsorship program? Receive up to $4,000 to go towards skill development or participation in activities/hobbies. For more information check our website.

As part of the 2021 sponsorship program successful applicants are required to create awareness for alopecia and AAAF. 

In the application process you will be prompted to share your ideas on how you can help create awareness. It’s important that you provide as much detail as possible to strengthen your application and we also encourage you to be creative with your answer to stand out. 

It can be tricky coming up with ideas so we’ve rounded up some examples from previous sponsorship winners. 

Bronze Sponsorship

Six-year-old Sarah received a bronze sponsorship that went towards hers fees for her Acrobatic Gymnastics. Sarah created awareness by wearing the AAAF logo on training gear, posting on social media and sharing pamphlets about alopecia around the gymnastics school.

Read Sarah’s story here.

Silver Sponsorship

Abbey was sponsored in athletics through the AAAF Sponsorship Program. Abbey included in her application that she would create regular blogs and videos for AAAF aimed at young teenage girls.

Read Abbey’s story here.

Gold Sponsorship

Kerry received a gold sponsorship which was used for her exhibition at Griffith Regional Theatre. Her artwork was inspired by her experience with alopecia. The AAAF logo was included in all advertising and Kerry donated to of the artworks to AAAF.

Read Kerri’s story here.

Dating and Alopecia with Shayna Burnes

Shayna, the face of Instagram account @hairsgonebabygone recently appeared on Insight SBS and talked about the hot topic – Dating with Alopecia Areata (including Totalis and Universalis). Shayna tells us how she conducted an A/B test on a dating site to see if posting bald photos affected responses. 

She brings such a light, easy energy to these important conversations that AAAF wanted to share even more of her story! Below we cover a little more about Shayna and her most important tips for dating!

View her on SBS here.

Profile 

First name: Shayna

Age: 37

First diagnosed: 18 months

Type of Alopecia Areata: Universalis

Fast 5 Questions 

What are you reading or watching right now? I’m late to the game on this show, but Suits. It was partly filmed in Toronto, my hometown, and one reason I watch it is to feel closer to home while we can’t travel.

Who’s someone you admire or look up to? My mum. She has an abundance of kindness, which reminds me to park my ego and support others. 

What’s something you want to learn? To complete a pistol squat!

What’s the bravest thing you’ve ever done? Moving around the world to Australia to give life a crack here. The same can be said about anyone who takes a leap to try something new whilst swallowing their fear of the unknown. 

If you had 25 hours a day, how would you use your extra time? Nap. No contest. I’d nap the hell out of that hour, every day.

Many people messaged Shayna about dating after @insightsbs aired a clip from the ‘Bald Truths’ episode in which a few people talked about dating. 

Here’s what Shayna has learned whilst dating as an openly hair-free woman:

1. It’s your choice whether to disclose your condition. In some profiles, I’ve explained my alopecia. In others, I haven’t mentioned anything. My fave approach is to say something akin to “rocking smooth skin like it’s my job”. It acknowledges my difference but leaves it up to the reader to enquire. See what feels most comfortable for you.


2. You won’t attract everybody. The bald look isn’t for everyone, and that’s okay. You aren’t attracted to everyone, either! Focus on those you are attracting; after all, they’re the ones who see your beauty.


3. You may attract people -because- of your hair loss. For some, a bald woman is a turn on. Depending on how the message is worded, you may find this flattering or objectifying. It’s okay to like it, not like it or be unsure. 


4. Some people will be dickheads. You might get a message about how you would “look better with a wig” or “men like women with long hair”. But you’re not alone – my friends with cute pixie cuts get similar messages. *block that loser*


5. Represent the full package. Do you love to travel? Potter? Nap? Are you into a sport or activity that lights you up? You’re more than your hair loss. Telling people the bigger story will help them see you’re an interesting human they should get to know – you just happen to have hair loss, as well.

You also have the option not to say anything on your profile and disclose once you feel comfortable. As someone who represents themselves without hair, I have no clue how to navigate that conversation, but I’m sure many of you do – and I’d love to hear how you’ve approached it!

Do you relate to any of this? What’s been your experience dating with hair loss?

Disclaimer: The views and opinions expressed in this blog post do not necessarily reflect the opinion of AAAF.

If there’s someone you would like us to interview or if you have a story you would like to share email sheridan@aaaf.org.au

17 Questions to Ask Your Doctor When Considering Treatment for Alopecia Areata

Did you know that a large majority of individuals with alopecia areata will have some degree of hair re-growth?

This is because the cells that supply the hair follicle remain active despite experiencing balding. But you may have an even greater chance at experiencing re-growth if you decide to pursue treatment for your hair loss.

Treatment is determined by your Dermatologist and if you decide to undergo treatment for hair loss (alopecia), there are some things you’ll want to ask your GP and Dermatologist before getting started. These are important questions regarding risks and side effects, costs, and alternatives to treatment.

1. Do I Need a Blood Test?

Hair loss has a number of potential causes. It may be caused by an underlying medical condition, a vitamin and mineral deficiency, or a hormonal imbalance, or it could be alopecia areata, which is what we are here to support with. Read more about alopecia areata here.  When you go to your GP, in the first appointment you may get a blood test done to rule out these other potential causes of hair loss. Then, a dermatologist will repeat that process on the first appointment to get a baseline. This test measures common electrolytes in the blood as well as other compounds such as calcium, glucose, sodium, potassium, carbon dioxide, chloride, blood urea nitrogen, and creatinine 

Blood tests should all be covered under Medicare. 

2. Does This Follow the Australian Consensus for Treatment Plan?

Prior to this study, there were no evidence-based treatment guidelines for systemic therapy of AA. This study developed an evidence-based consensus for treatment, specifically in regard to systemic treatment. 

We recommend you take this study to your appointments and use it to help make decisions regarding when to begin treatment, how to monitor and assess treatment, and appropriate cessation of therapy.

3. What Are the Risks? Is It Safe to Fall Pregnant? 

It is important to always consult with your doctor about any potential risks in your chosen treatment. You can reduce any risks by knowing what they are and how to minimise them. 

Remember that in many cases, receiving treatment requires that you watch your lifestyle closely to ensure you’re not hindering the positive effects of treatment. Make sure to ask your doctor about any changes you should make to your diet, physical movement, and emotional condition to ensure you get the most of your treatment while reducing any potential risks. 

If you are planning on falling pregnant soon, it is best to discuss this with your doctor to ensure that the treatment plan you pursue supports you and your baby. 

4. What Are the Long-Term Side Effects?

The long-term side effects of any treatment are unique to the individual, the type of treatment they pursue, and the stage of hair loss they’re at. As such, the potential long-term side effects of any treatment are out of the scope of this blog post.

The good news is that AAAF have a wealth of this type of information on our website. Be sure to check out our treatments section for more information on various treatment options and their potential long-term effects. 

5. How long will it take to work? 

There is no cure for alopecia areata. However, there are treatments that have had positive results. Each individual case varies and there is no timeline for experiencing positive results with any form of treatment, and results will vary from individual to individual. Read about different treatment options here. 

Any regrowth can take a minimum of 6 to 12 months according to Harvard Medical School. When you understand the phases of hair growth, it is easier to understand the results. You can read more about this here. 

6. What Happens If I Don’t Do Anything?

As there is no guaranteed result for any treatment plan, you may choose not to pursue treatment at all and that’s okay too.  

There are absolutely no risks to your general health if you choose not to pursue treatment now. However, some individuals will experience psychological impacts if their hair loss continues. You should know that AAAF is here to support you through the process and connect you with many people who are proud of their hair loss.

7. What Happens If Treatment Doesn’t Work?

Ask your doctor what will happen if the proposed treatment doesn’t work. Ask how long you will wait for results before deciding it has or hasn’t worked. You should also ask if you can pursue a different course of treatment and what that might look like.

Feel comfortable asking your physician any and all of the questions you can think of until you are completely satisfied and feel supported.

8. How long will I need to be on treatment? 

Each treatment and person are unique, but you will find it is generally recommended you stay on your chosen treatment from anywhere from a few weeks to a few months. Ask your doctor what is best for you. 

9.  How often will I need to see you? 

Depending on your treatment plan and unique needs, your doctor will request regular check-ups that may be monthly or every few months. These may also vary in frequency at different stages of your treatment.

10. What do I do if I get a new patch? 

If you get a new patch and are using a topical treatment, your doctor may recommend you apply the treatment to the new patch. Make sure you are kind to yourself and try not to worry if a new patch appears. 

11. Are there any natural treatments or diets that I can start?

As there is no known cause on what triggers the onset of Alopecia Areata, it is impossible to state with certainty that a change in diet or a natural treatment will help or not.  As Alopecia Areata is known to be an autoimmune disease, anything that promotes increasing the immunity can be seen as an option. 

12. What Are the Rates of Relapse and Remission?

According to this study, results have shown that  40% of people with a hair loss patch will not develop another patch of hair loss and will achieve spontaneous and complete durable remission within 6 months. An additional 27% will develop an additional patch of hair loss but will still achieve complete durable remission within one year. 33% of individuals will develop chronic alopecia areata, which is defined as alopecia areata that lasts longer than 1 year. 

The course of alopecia areata is unpredictable and your doctor will not be able to tell you where you fit into these statistics. However, it’s important to note that without systemic treatment 55% of those individuals with chronic AA will experience patches of hair loss regularly with some regrowth. 

13. What Are the Costs?

Costs will relate to the type of treatment you’re taking and how often you have to visit the doctor. Be sure to ask your doctor for the cost of your treatment & visits.

What you have to pay out of pocket to cover those costs is unique to your private health insurance, the state in which you live, and your specific needs or medications. Some medications may be covered by your private or state health insurance, whilst others may not be. The same can be said for the costs of wigs.

It is recognised that alopecia doesn’t receive the same financial support from government bodies or private foundations that other conditions, such as cancer does. It’s for this reason that we’ve put together a sponsorship program to alleviate some of the financial burden of alopecia areata treatments. Learn more about our sponsorship program here.

An example of costs might be: 

Visit to the GP for a referral and initial consultation: 

Depending on what your GP charges, if they bulk bill or whether you belong to a health co-op or have a health care card, the normal Medicare rebate is $36.30 (as of 29.4.2021). 

It is better to have a referral for specialist appointments because then you can claim a Medicare subsidy), otherwise if you do not have a referral then you don’t get that amount covered.

Initial dermatologist visit: 

Up to $300 for an initial visit according to Melbourne Skin & Dermatology.  The normal Medicare rebate is around $75.05 and you may be able to claim this on your private health insurance.   Should you wish to travel to a major city to see a dermatologist, you will need to consider your travel costs. 

Blood work: This may be bulk billed and covered by Medicare. Consult to see what Medicare covers for your unique treatment plan. 

Treatment: The cost of your treatment will depend on the treatment you pursue. Options include but are not limited to: Corticosteroids, Topical sensitizers, Minoxidil, Anthralin, Platelet-Rich Plasma (PRP), Immunomodulators, Trichology, Scalp Micro Pigmentation, Hair Growth Based Vitamin Products.  Some drugs, such as tofacitinib, that are used to treat AA are also used to treat other illness and disease and are on the Pharmaceutical Benefit Scheme (PBS), you can consult the PBS here. 

Some PBS drugs have a specified condition for which you can claim the PBS subsidy price – Alopecia Areata is often not recognised. It means you have to pay the full price for that drug because it isn’t a recognised drug to treat AA by the PBS. 

14. What Other Types of Support is Out There?

Whether or not you are pursuing treatment, hair loss can have deep psychological impacts on the individuals who experience it. It’s helpful to connect with people who have gone through similar experiences. 

Ask your doctor if they have any information about support groups in your area. Or, check out these AAAF support groups to connect with others who can provide support, advice, and friendship.

15. If I wear a wig/hat will it stop the treatment working? 

No, there is no evidence to suggest that headcovers change the efficacy of any treatment. You can wear as many hats, scarves or wigs as you like! 

16. Any tips on how to manage my existing hair?

You can manage existing hair in many ways. You do not need to shave your hair when you have alopecia areata. You may choose to, but you do not have to. You get to decide what best suits you.  Some people prefer to use bandanas, hats, toppers, wigs, or to shave.

17. When new hair grows what can I expect?

Your hair may grow back the same as it was before, or it may be slightly different. There is no way to know until it does. Some people find that to start the hair grows back white before taking on a colour. You may wonder if you can colour the hair. Colouring may weaken the hair, but it doesn’t affect the hair root. If you decide to colour it is more likely to snap and not grow to full length, but it doesn’t prevent the hair from regeneration.

Kellie Scott (@hairlossboss) alopecia story

Name: Kellie Scott

hairlossboss alopecia story

Type of Alopecia: Androgenic alopecia

First diagnosed: 2017, aged 31. Hair loss began at 27.

Instagram: Hairloss Boss (@hairlossboss) 

If you’re a part of the online hair loss community, chances are you’re familiar with Kellie Scott and the wonderful content she shares through her instagram platform @hairlossboss.

For those who don’t know Kellie, she is a 35-year-old wig-wearing journalist based in Brisbane specialising in sex and relationships reporting. 

If you’ve been recently been diagnosed with alopecia Kellie suggests following all the social media accounts of people who openly talk about their hair loss. “The more you expose yourself to people in that community, the quicker it becomes normalised. I’ve been a part of the hair loss online community for several years now and my hair loss does not affect me whatsoever!” Kellie said. “It’s no big deal, just a part of my life. They are also great people to reach out to for advice.”

Something that Kellie has learnt since her diagnosis is “some of the things I used to feel shameful about, like hair loss, were purely a result of society’s unrealistic beauty standards and the expectation on women to be beautiful.”

Kellie never really loved her hair and enjoys changing her look up every day with different wigs. “I don’t have bad hair days – I wear wigs! And honestly I wish I discovered them years before my hair loss even began” said Kellie about managing her bad hair days.

As a journalist who specialises in sex and relationships we asked Kellie how to mention hair loss on a first date. “You may not feel the first date is the right time, or you may even want to let them know in text before you even go on your first date. There is no wrong timing” said Kellie.

Kellie’s advice is to remember these three things:

  1. The person should feel honoured you are sharing something vulnerable about yourself with them. It’s a privilege. If they can’t respect that – red flag.
  2. I consider sharing something vulnerable like hair loss or hair wearing as a great test of character. If that person responds in a positive way, you know you’re onto someone worth seeing again. If they don’t, well, they’ve saved you wasting any more of your time.
  1. It’s only as big of a deal as you make it. Likely, this person has little experience with hair loss or hair wearing. So they’ll take your lead. I like to just casually mention my wig-wearing to people and honestly, it’s no biggy.

Kellie’s alopecia support team includes the entire hair loss community who she converses with online and in person, and her partner. “We (hair loss community) have regular hair loss meet-ups in Brisbane and they are so fun. Such an awesome bunch of babes” said Kellie. “My partner is also a wonderful support – mainly for putting up with my wigs lying all over the house.”


Disclaimer: The views and opinions expressed in this blog post do not necessarily reflect the opinion of AAAF.

If there’s someone you would like us to interview or if you have a story you would like to share email maddi@aaaf.org.au

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