The word “alopecia” means hair loss. Alopecia Areata is an auto-immune disease that results in hair loss on the scalp and elsewhere on the body. It can range from small, individual smooth patches of hair loss, to total loss of all hair on the body – including ear and nose hair. Alopecia Areata is not uncommon, and current estimates suggest that 2% of the population will be affected by the condition at some point in their lifetime1. Alopecia Areata can be a lifelong condition, and can deeply affect self-image, self-esteem, confidence, and even mental health. But there is hope. Jo shares her personal and moving story.
One day at work in July 2019, a friend asked me if I had burnt my hair with my hair straightener. She noticed a small 20 cent sized patch of missing hair. I had never noticed it. I saw my GP who referred me to a dermatologist who diagnosed me with Alopecia Areata (AA). Alopecia was definitely something I had heard of. I always assumed Alopecia was the complete loss of hair and not small circle patches.
Rapidly, that 1 small patch transformed into an AA ophiasis pattern (a unique pattern of hair loss, where the hair around the entire outside of my head fell out). Losing my hair and identity was incredibly traumatising and upsetting. I had no history of AA and prided myself on how fit, active and healthy I was. As I have now learned, AA is an autoimmune condition and can impact you at any age and health status.
Despite being a very confident person, I only told my partner, parents, and brother about my condition. I was embarrassed, fearful, and sad that I no longer looked like ‘me’ anymore. The one blessing of COVID-19 was I didn’t have to leave home and answer people’s questions about my hair.
AA is a hard illness to sit within yourself. There is no cure and not all treatments work for everyone. Unfortunately for me, AA ophiasis pattern is very rare and also very resistant to treatment.
I feel very lucky to have a family who works in the medical field so discussing treatment options and medication came naturally. I joined AAAF (Australia Alopecia Areata Foundation) for support, read medical journal articles on new treatments, spoke to my medical team, and joined other support networks.
As a psychologist, the strategies I ask my clients to use, I had to apply to myself included deep breathing, mindfulness, grounding, self-acceptance, and rejection of traditional beauty standards. I am grateful that I know my partner and family love me no matter what. I feel that having their support also helped me to be brave. There were lots of nights I laid awake feeling anxious and wondering “what if I lose all my hair?” “what if I am like this forever?”.
After 2 years of treatment which included- painful injections, an intense steroid medication, and very expensive autoimmune suppressant medication, I have had some hair re-growth. In April 2021, I relapsed and some new patches formed with incredibly rapid hair loss.
I also started wearing wigs which was another journey in itself. The anxiety of “what if people notice I am wearing a wig and ask me about it?” is huge and one I still have not faced. Other than my family, I have told no one I wear a wig. I still haven’t come to terms with that in myself.
In this picture of me, I was in “remission” and only had small patches easy to cover with my long hair sections. Flares and recurrence can happen at any time, so this disease never leaves me completely and I need to manage my way through the ups and downs.
The financial burden I have carried from multiple treatments, expensive medication, and wigs (none is subsidised) is approximately $15,000 to date. I was fortunate that I have good health literacy, family support, and financial stability to try to fight my AA.
Today I have done a lot of work to accept AA in myself and what it means for me moving forwards. In the morning I take my medication, put my wig on and go about my day as a psychologist. I have to see my dermatologist regularly to manage my hair loss. I often remind myself that AA is not my fault and I did not choose this. I have made peace with my condition and know my worth is not defined by my hair or lack thereof.
1. Australia Alopecia Areata Foundation. About Alopecia Areata. About Alopecia Areata | Australia Alopecia Areata Foundation (aaaf.org.au). Accessed 20/01/2022
Did you know there are many types of alopecia areata? Each type has a unique pattern of hair loss. You may have seen that some people with alopecia range from just a few patches to having no body hair at all. This guide will help you understand why that is and attempt to answer the common question of “how much hair will I lose?”
If you have AA and are wondering “will I lose my eyebrows and eyelashes?” like so many things to do with AA, there’s no easy answer to this question. You could lose them very quickly, or you may not lose them. Let’s have a look at why that is in this quick guide to brows, lashes, and alopecia areata.
How Alopecia Causes Hair Loss
Alopecia areata is an autoimmune disease. For unknown reasons, the immune system mistakenly recognizes your own body as the enemy and attacks it. Alopecia areata -targets the hair follicles. This results in the hair follicle slowing down hair production.
Alopecia areata typically presents as round patches of complete hair loss. These patches usually develop over a few weeks and may present as one patch or multiple patches. Alopecia areata does not lead to the inability to regrow hair. In many cases, hair loss isn’t permanent, and patches regrow over the course of several months.
However, for some individuals, alopecia areata will persist and hair may never regrow. For an even smaller percentage of people, alopecia areata will develop into other types of alopecia. Alopecia totalis involves the complete loss of hair on the scalp and Alopecia universalis involves the loss of hair on the scalp as well as the body (including eyelashes and eyebrows).
To best understand how Alopecia Areata works across the different parts of your body, its important to understand the phases of hair growth. The eyebrow growth cycle typically lasts about 4 months;the eyelash life cycle typically lasts 3 months; and the scalp hair’s growth cycle typically takes about 3-4 years to complete. You can read more about them here.
Individuals with alopecia universalis experience the loss of all their body hair. That includes the hair on the scalp, body, and face. But there’s no particular timeline for this. Hair loss in some individuals occurs suddenly, in only a few days or weeks. For others, the spread of hair loss takes significantly longer.
If you already have alopecia areata and are starting to notice hair loss on other parts of your body, it’s a good idea to visit your doctor. While you may be losing hair for many reasons (such as age), if you are unsure about it, a trip to the doctor can be a good idea.
Medication Options for Alopecia Universalis
Like alopecia areata, there is no cure for alopecia universalis. However, there are some treatments that have been effective in some individuals. When treating AA there are several medications that treat scalp hair loss that will also help with eyebrow and eyelash, however, some medications can be used to specifically target eyebrow or eyelash hair loss. For eyelashes and eyebrows specifically, you make consider the use of JAK creams for eyebrows and Latisse treating glaucoma, it can be used to grow and thicken eyelashes.
Did you know we keep a list of treatment options here? This is a general list and what medication is right for you will depend on the conversation you have with your doctor. They’ll take into consideration your age, medical history, and severity of your condition before recommending something that might work for you.
Coping with the Loss of Brows and Lashes
Although alopecia areata doesn’t have any physical impact beyond hair loss, there’s no doubting the effect it can have on the emotional and mental wellbeing of individuals who have it. Alopecia areata can cause intense emotional distress, high levels of anxiety and depression, and personal, social, and work-related problems.
When it comes to hair loss on the scalp, you might choose to use accessories such as hats, scarves and wigs. When it comes to brows and lashes, you also have a few options!
Options might include
Makeup (eyebrow stencils can help with this)
Cosmetic eyebrow tattooing
Magnetic lashes (yes – you can use them even if you don’t have lashes).
Temporary stick on eyebrow tattoos. You can view them here
A note on cosmetic eyebrow tattooing: Today’s techniques, like microblading, make it near impossible to tell the difference between real brows and tattooed ones. And because brows are so in right now, there’s also tons of makeup kits that help you create the illusion of full brows. False eyelashes can help satisfy your need for thick, curly lashes. There are professional salons that do lash extensions or you can purchase fake lashes at basically any chemist or beauty place.
But perhaps the most important strategy for coping with the loss of lashes and brows is to find people who have similar experiences. You can read about other people’s stories here or find a local support group where you can share your thoughts and feelings in a safe and understanding space.
That loss is part of the normal hair growth cycle. But when you have alopecia areata (AA), your hair doesn’t follow that same pattern.
If you have alopecia areata (AA), understanding how hair grows is an important part of understanding your hair loss, treatment, and what regrowth might look like. To help you in this understanding, we’re breaking down the four phases of hair growth.
Let’s have a look at how that works.
The Four Phases of Hair Growth & Alopecia Areata
Your hair follicles grow and shed hair in a cycle. Each component of that cycle is called a phase, of which there are four.
The cycle begins with the long growing phase, then enters a transitional phase, moves to a resting phase, and finally culminates in a shedding stage, which is when the hair falls out. Then, a new hair begins to grow in the follicle and this starts the cycle all over again.
The length of these phases varies depending on the individual as well as the region of the body. For the average individual, as many as 100 hairs reach the shedding stage every day and fall out. But when the cycle is disrupted, or the follicle is damaged, it impacts the functioning of these phases and more hair may fall out or hair may fall out more quickly than it can be generated. AA is an example of disordered hair follicle cycling.
The Anagen Phase
The anagen phase is the long growing phase. It’s called the long growing phase because it can last anywhere from three to five years.
This is when your hair follicle is actively pushing out the hair. That hair continues to grow until it reaches the shedding stage.
Experts believe that it’s this phase that’s interrupted in individuals with AA. It’s believed that the immune system attacks the hair bulb, causes inflammation, and this inflammation leads to anagen arrest. Anagen arrest is a disruption of the growing phase which leads to abnormal loss of anagen hairs.
The Catagen Phase
The catagen phase is a short transitional phase that begins when the anagen phase ends. This phase only lasts approximately 10 days.
During the catagen phase, the hair follicle shrinks which leads to slower hair growth. Nearing the end of this phase, the hair itself will separate from the hair follicle, though it continues to grow and remains in place.
The Telogen Phase
The telogen phase is the resting/retaining phase. It usually last about three months.
In his phase, the hair has stopped growing from the follicle. While the hair isn’t quite ready to shed yet, a new hair will begin to form in the follicle.
The Exogen Phase
The final phase of hair growth is the exogen phase, which is the phase in which the hair is shed. This lasts between two and five months.
The exogen phase is sometimes considered an extension of the telogen phase. But it’s this phase wherein the hair is released from the scalp. Washing or brushing your hair usually helps this process.
More Helpful Hair Information
There are four phases of hair growth: the anagen, catagen, telogen, and exogen phases. These phases start with the hair follicle pushing out the hair and end with the shedding of the hair. But in individuals with AA, this cycle is thought to be interrupted in the very first phase.
Understanding this process gives you a little more insight into where hair loss occurs and why. And for more helpful hair information like this, be sure to check out our blog regularly.
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.
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 living well with 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:
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.
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.
While only 2% of those individuals are at risk for developing AA for their lifetime, the experience of hair loss can be difficult, regardless of the low potential for permanence. So, if you’ve found a bald patch, it’s not uncommon to be feeling overwhelmed, confused, and lost.
A bald patch doesn’t necessarily point to AA.
Having a clear plan of action regarding what to do when you find a bald patch can provide you a sense of control when you’re feeling anything but. Before you start thinking up the worst case scenario, take a breath, and follow these 7 steps.
1. Stay Calm
There are many things that could be causing your hair loss. Hair loss may be the result of:
Hormonal changes during pregnancy, after childbirth, as a result of menopause, or due to thyroid problems.
Medical conditions such as a scalp infections, ringworm, or other disease for example Lupus
Side effects from medications or supplements.
A very stressful or traumatic event.
Hairstyles and hair treatments.
Considering the abundance of reasons that could be behind your bald patch, there’s no need to jump to the worst case scenario and get yourself stressed, worried, and anxious. Stay calm, find a breathing exercise, and move on to step 2.
Step 2: Make an Appointment With Your GP
The first call you should make after finding a bald patch is to your GP, they can help you get to a specialist so you can find your answers.
Being armed with information that you take to your GP, can eliminate many of the factors in Step 1. Having a blood test will not give a diagnosis of AA, but it can rule out other conditions like hormone imbalances, an overactive or inactive thyroid or lupus. You can then take this information to the dermatologist.
Step 3: Make an Appointment With Your Dermatologist
A dermatologist is generally considered the best specialist for diagnosing and providing treatment for AA. Your GP can make recommendations as to dermatologists in your area and provide the necessary referral for making your appointment.
Make sure that you’re comfortable with the dermatologist after your first appointment. Finding a bald patch can cause emotional and psychological upheaval and you want to be sure that your doctor is someone you trust and feel comfortable speaking to and working with.
If you don’t feel like you can have that kind of relationship after your first visit, keep looking. You can use this search tool provided by The Australian College of Dermatologists to find dermatologists in your area.
4. Consider These Simple Ways to Help You Cope
You might be waiting some time to see a dermatologist. That could be weeks or even months without a diagnosis or answer. In the meantime, you might consider finding small ways to help you cope with your discovery.
Depending on where your bald patch is, and how you feel about it, you might consider hats, scarves or alternative hair. It is totally up to you!
Seek independent counselling from a professional may help to create more positive self-esteem, leading to a lower level of stress and anxiety.
Accept the journey of mixed feelings- it’s okay to have a bad day.
This is also a good point to initiate self-care habits, such as yoga, meditation, a gratitude practice, or a commitment to spend more time outdoors. Taking time for yourself to practice self-love and self-care will help you move through this experience with grace and confidence.
5. Consider Seeking Support
The relationship you have with your dermatologist and GP does not provide all the emotional support you need. It might be comforting to speak with people who have had similar experiences. This is where support groups come in.
A support group bridges the gap between your treatment and your need for emotional support. It’s where you can meet and share with people experiencing the same emotions as you are. Here, you can find strength in other’s experiences, learn about coping strategies, and receive first-hand information from others who possibly asked the same questions at the start of their journey.
Understand that you will have the need to search for a meaning.
Find the online Alopecia Support Group for your state and request to join. These online groups are 100% private and they’re filled with AA individuals as well as their families. These safe spaces give you a place to ask questions and find individuals to share with. You may also feel self-empowerment by helping others with their AA journey.
6. Register and Research With AAAF
If you’re not already registered with AAAF, then you should take the time to do so. Registration takes no more than a few minutes and it gives you access to new events, research, and programs that you might be interested in. You can register with AAAF here.
Plus, AAAF has a wealth of information, studies and stories on the blog and website that could really help you. Have a click around and have a look! We even have a youtube channel with even more information.
7. Purchase a No Hair We Care Pack
The AAAF created the No Hair We Care Program (NHWC) that delivers care packages to people with any form of AA. The package contains headwear, skincare, DVDs, books, makeup, jewellery, games, and more. They come in a range of options, including packages designed for males or females with different colour options (simple and classic or bright and bold). You’ll also find a wealth of information and resources to support you through this time.
Each NHWC package has over $100 worth of items and sells for only $15 (+GST). They can be purchased on the AAAF e-store and the shipping is covered regardless of where in Australia you live.
If you’ve found a bald patch, there’s no need to panic. Stay calm, take a deep breath, and follow steps 1 through 7. After going through these steps and adopting their recommendations, you should find yourself in a calmer and more informed place from which to make decisions and move forward.
In 2020, you don’t have to look far to find bad health advice and uninformed medical opinions. But for people with Alopecia Areata, Dr Google and Professor Facebook are nothing new.
If you’ve had alopecia for a while, you know who I mean. The snake oil salesmen, the old wives with their tales, the dangerous diet influencers.
“Have you tried rubbing an onion on your head?”
“Guaranteed results in just two weeks!”
“My cousin tried this and it worked for them so it will definitely cure you!”
I’ve been living with AA for over 20 years, and can confirm that these voices have always been around. People have been selling quick-fix schemes and promoting cures without evidence for as long as people have been losing hair. However, in the era of fake news and alt-facts, I worry they’re getting better hiding their biases and passing as real science.
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.
“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.
Twenty years ago my journey with Alopecia Areata started. My son, then 20 months old, had a chicken pox that rested at the hairline on his forehead. Within days his hair had fallen out and was starting to receded down the center of his scalp.
With no knowledge of the cause and no visible sign of hair regrowth, off we went to the dermatologist.
On inspecting my son, the conclusion was Alopecia Areata. After the general questions probing what that meant, came the question from me “so how do we treat this”.