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.
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.
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.
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!
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 firstname.lastname@example.org
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 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:
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. Must I shave my hair?
No, 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.
17. Can I colour the white hairs that regrow?
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.
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:
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.
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.
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 email@example.com
It’s estimated that 55% of chronic alopecia areata patients will have persistent multifocal relapsing and remitting disease if they do not receive systematic treatment.
However, there is also very little evidence that active treatment can alter the natural progression of the disease. But it may be argued that a large part of this lack of evidence is related to the lack of research and consensus regarding alopecia and alopecia treatment.
One way to close this gap is to create a global registry of alopecia treatment and outcomes. Before doing so, it’s imperative to identify what type of data and information should be shared on these registries in order to make it useful.
The AAAF participated in a 3-round eDelphi process to address exactly these questions and below is a summary of what we found. Keep reading to learn about the importance of creating a global network of alopecia registries and what needs to be included.
What’s Missing from Alopecia Treatment
There are a number of treatments currently available to individuals with AA. These include topical, intralesional, and systemic agents.
You can read about the road map for diagnosis and the Australian expert consensus statement here. However, there is still much to learn about the optimal treatment algorithm and each treatment’s r use, effectiveness, and tolerability.
One step toward alleviating these gaps in understanding is the creation of a place where data regarding treatment and outcomes can be shared and reviewed by experts around the world.
Toward a Global Registry of Alopecia Treatment and Outcomes
A patient registry is “an organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves a predetermined scientific, clinical, or policy purpose(s).”
In short, a registry is a place where standardized information about a common condition or experience can be gathered. That data may be used for any number of reasons, including:
Recruitment for clinical trials
Understanding the relationship between behaviour patterns and disease development
Developing research hypotheses
Improving health care
Developing best practices in care and treatment
In terms of a global network of AA registries, the biggest benefit is related to these final two points: monitoring outcomes and developing best practices for treatment. In fact, the eDelphi exercise emphasized that a global network of patient registries would help “redress the paucity of comparable, real-world data regarding the effectiveness and safety of existing and emerging therapies for alopecia areata.”
But if a global network of patient registries is created, what are the most important components of that registry? That is, what standardized information should be included in order to make the registry useful to researchers?
What’s Required of an Alopecia Registry?
The global eDelphi exercise was a 3-round process that culminated in a face-to-face meeting at the World Congress of Dermatology. It involved 66 expert physicians, patient organizations, scientists, representatives of the pharmaceutical industry, and pharmacoeconomic experts. The purpose was to identify what data should be captured in a global network of alopecia areata patient registries, especially in terms of the safety and effectiveness of existing and emerging therapies.
The exercise resulted in the identification of 92 core data items across 25 domains. There were an additional 20 noncore data items identified, but these would be used to harmonize data in the centers that wanted to record them. You can learn more about the core and noncore items here.
Identifying these standardized items was the first step to creating a global network of registries that could help solve the evidence gap in alopecia treatment and outcomes. How? Because with standardisation, experts can access comprehensive and comparable data sets as well as real-world evidence from existing therapies.
Help Us Create a Global Registry
There exist large gaps in evidence regarding alopecia treatment and outcomes. But by creating a global network of AA patient registries, we can begin to close that gap.
Of course, creating a global network of that magnitude takes planning. The first step to the planning was this eDelphi process to identify what data should be maintained in the registry.
And now that we’re one step closer, we need your help. Consider donating to the AAAF to help fund our mission to improve the healthcare and quality of life for individuals with AA.
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.
Long-term stress can lead to mental health problems, cardiovascular disease, obesity, gastrointestinal problems, and even hair loss. But is stress the cause of Alopecia Areata?
If you’ve ever gone to the doctor to discuss your hair loss and been asked about your stress levels, you might have wondered that exact same thing. So, today, we’re explaining the links between stress, your immune system, and hair loss.
Read on to find out the difference between stress-related hair loss and AA.
Stress occurs when you find it emotionally, mentally, or psychologically difficult to cope with a given situation or experience. This type of stress is referred to as psychological stress, which means that the difficulty coping places distress on the mind.
But every individual reacts differently to stressful situations and experiences. How you and your body react to stress depends on the situation itself, your tolerance to stress, your past experiences, and even your personality type.
For some people, psychological stress can turn into physical stress on the body. Over a period of time, physical stress can lead to a number of health conditions, up to and including hair loss.
In order to understand this relationship between stress and hair loss, we first need a better understanding of how our immune system functions.
The Immune System, Hair & Stress
Your skin is the largest organ on your body and it acts as a barrier between what’s inside and outside. As such, your skin is an important part of your immunity.
For example, when you experience an injury to your skin such as a cut, your immune system sends immune cells to the trauma site. These specialized immune cells are called macrophages and they’re capable of healing in many ways, including removing dead or damaged tissue, allowing the growth of new and healthy cells, and regulating the immune response.
At the same time, your immune system triggers an inflammatory response. This response isolates the trauma site and is intended to help get macrophages there by making it easier for white blood cells and nutrients to move more efficiently.
If you have a healthy immune system, this is how the process should work. But if your immune system is weak or impaired, which can be one consequences of psychological stress turning into physical stress, then this process doesn’t play out as intended.
For example, a weak immune system may be incapable of regulating the inflammatory response required to get the macrophages to the trauma site. Too much or too little inflammation hinders healing and your body is more vulnerable to hypersensitivity and other problems.
This is the perceived connection between stress and Alopecia Areata (AA). The concept is that psychological stress causes physical stress and physical stress leads to a weakened immune system. A weakened immune system can’t properly regulate its responses to trauma and one of the potential consequences of that is hair loss. And while hair loss can definitely be caused by this relationship, AA is not.
What DOES cause AA?
AA is an auto-immune disorder. An auto-immune disorder is when the immune system can’t tell the difference between your own cells and foreign cells. This leads the immune system to incorrectly identify your normal, healthy tissues and cells as a potential threat and thus attacks them.
In AA, the cells and tissues under attack are the hair follicles. The immune system sends white blood cells to the hair follicles (especially scalp follicles) as a natural defense against a perceived threat. That attack on the hair follicles interrupts natural hair growth, which eventually leads to hair loss.
As an auto-immune disorder, AA is significantly more serious than an immune system weakened by stress. That means that, if you have AA, when your stress goes away, the hair loss doesn’t.
Hair Loss That IS Caused by Stress
So, while AA isn’t caused by stress, there are some ways that stress can cause hair loss. Here are 3 of the most common types of stress-related hair loss.
One stress-related condition that’s related to hair loss is a high white blood cell count. High white blood cell count indicates that the body is trying to fight an infection, as per the macrophage process discussed earlier. It may also indicate the body is under a significant degree of stress.
If the latter, it can lead to hair loss. This is because, as per the macrophage process, the white blood cells go to the top of the skin to fight against a perceived threat instead of going down to the hair cell where it can be nurtured and come out as a piece of hair.
Telogen effluvium is another form of stress-related hair loss. Telogen effluvium occurs when significant stress causes your hair follicles to enter the resting phase of their development. In just a few months, that leads to hair falling out at an unnatural rate.
Another common type of stress-related hair loss is trichotillomania. This may occur as the result of stress, tension, loneliness, boredom, or frustration. It’s characterized by an irresistible urge to pull the hair from the body, especially the scalp and eyebrows. Trichotillomania is typically employed as a coping mechanism, albeit, an unhealthy one.
The difference between these 3 conditions and AA is that, once the stress is eliminated and the cortisol levels return to normal, the hair grows back. For individuals with AA, reduced cortisol levels have no impact on their hair growing back.
Learn More About AA Myths & Facts
Does stress lead to hair loss? The short answer is some hair loss, yes, but stress does not lead to Alopecia Areata. The long answer involves a deeper understanding of the impact of stress on our body, our immune responses, and how AA causes hair loss.
There’s a lot to understand when you or a loved one has been diagnosed with AA, and we can help with that. Visit our blog regularly to learn more about AA myths, facts, and the support that’s out there.
A study on the physical activity levels of people with alopecia areata (AA) found that nearly 82% of participants did not meet the physical activity guidelines recommended by the World Health Organisation (WHO). In addition to that startling figure, participants who did not meet those guidelines and who had more than 50% hair loss on their scalp were more likely to report depression, anxiety, and stress.
While there are much research done on how to increase physical activity levels among the general population, however, there are no research was done on the AA population.
A study was done by Yamuna Rajoo et al., to understand the barriers and enablers to physical activity to fill in that gap. The authors developed a model that can be used to inform future physical activity directions.
The model shows that an individual with AA moves along four phases of the path to accept their condition. At each phase, some behaviours and emotions act as barriers or enablers to physical activity participation.
The 4 phases are:
Phase 1: Onset of AA (Mainly hair loss due to AA)
Phase 2: Reaction towards the condition
Phase 3: Adjustment
Phase 4: Acceptance
Phase 1 and 2
Phases 1 and 2 of the process of accepting AA are closely connected. An individual in phase 1 has recognized their hair loss and received a diagnosis. Upon receiving the diagnosis, the individual moves into phase 2. In the second phase, participants of the study spoke about the physical, psychological, and emotional changes that occurred after finding out they have AA. These changes were characterised by psychological distress, which represents the first barrier to physical activity experienced by individuals with AA. Participants in phase 2 described a psychological and emotional state characterized by symptoms of depression, anxiety, and stress. This psychological distress is the first barrier to physical activity in people with AA. Emotions of depression, anxiety, and stress manifested as shyness, embarrassment, and self-consciousness when considering participation in physical activity.
Phase 3 of the process is the adjustment. The authors identify three barriers to physical activity in this phase: physical, environmental, and psychosocial. There were also two enablers to physical activity
identified in this phase. The first barrier to participation in phase 3 was physical. This barrier has to do with the visible physical difference of hair loss and often involves wearing a wig. Participants described avoiding physical activity due to concerns about the noticeability of the wig, having to remove the wig to participate, and a feeling that removing the wig would cause others discomfort. The second barrier to physical activity participation is environmental. This barrier is related to literal environmental concerns while wearing a wig, such as a discomfort of wearing a wig in heat and humidity or wind removing the wig. It also referred to the inability to wear a wig for certain activities, such as water sports. The final barrier to physical activity participation in phase 3 is psychosocial. This was not only a barrier to physical activity participation, but a barrier to participating in many common social activities, including shopping, socializing with friends, and even leaving the house. The reluctance to participate is caused by the anxiety, self-consciousness, and embarrassment associated with hair loss being noticed or the noticeability of a wig.
On the other hand, psychosocial factors sometimes acted as enablers to physical activity participation. Specifically, having social support from friends, family, social media, and in support groups was correlated with physical activity participation. Some participants reported relying on social supports to help them start and continue the activity and, more importantly, social support facilitated the movement from the adjustment phase to the acceptance phase. The other enabler identified in phase 3 was body image coping. Participants who were physically active at this stage of the process were able to do so by adapting three aspects of body image coping factors: avoidance, appearance fixing, and acceptance. These strategies minimized the impact of physical activity on an individuals’ self-concept and body image. With that said, in some cases, the effort put into appearance fixing in terms of concealing hair loss and managing a wig was burdensome. Not only did managing a wig comes with negative experiences, but it also impacted an individual’s sense of authenticity, which in turn affected social relationships.
Phase 4 could be the most important phase of the 4-phase journey. In this phase, participants exhibit far higher levels of physical activity participation. For that reason, the acceptance phase is also known as the enabling phase. By phase 4, participants had accepted their hair loss condition. This acceptance is viewed as the key factor in physical activity participation. When individuals accepted their condition, they were more comfortable in physical activity settings and exhibited higher adherence to physical activity.
Rajoo et al., have identified a 4-phase path toward the acceptance of AA, noting the barriers and enablers to physical activity at each phase. Those barriers include psychological distress in phase 2 and physical, environmental, and psychosocial barriers in phase 3. Enablers in phase 3 included psychosocial factors (specifically, social support), and body image coping factors. However, phase 4 is seen as the enabling phase, where individuals have accepted their AA and that acceptance correlated with increased physical activity levels.
This study is intended to inform the development of evidence-based interventions into physical activity among people with AA. It suggests that helping people along the path to acceptance will, in turn, help them embrace increased physical activity participation. Because increased physical activity is associated with better mental health outcomes in diverse populations, this information is invaluable to assuring the mental wellness of people with AA.
Studies like these seek to improve the lives of people with AA. While similar studies exist for the general population, more research that considers the specific experiences of individuals with AA is needed.
The AAAF supports a multitude of research projects aimed at doing exactly that, and you are a big part of that mission. Please consider donating to the AAAF so that we can continue to fund important research such as the report we dissected today.
For the last 4 years, AAAF has been working on supporting studies that analyse if people with alopecia areata avoid doing sport, as well as the strategies to encourage people to do more sport. You can read more on this here. (insert a link to a blog post on our recent study)
It is very important that you make your mental health and self-care a priority in your journey with alopecia.
We recently asked our online community for their favorite things to do when they aren’t feeling good about their alopecia areata and we got some AMAZING answers, shared in this video.
Would you like to be a part of these conversations? Make sure you are in our Facebook groups!
Alopecia areata (AA) is a condition that causes hair loss. But the amount of hair loss and the duration of time that it persists varies greatly between individuals.
The reason for this is unclear, as is so much about the AA. While we know that it’s an auto-immune condition, we don’t have enough information about the causes or outcomes to be able to identify a cure.
However, we are getting closer. We know a lot more about AA than we did even a decade ago, and we can get even closer with your help.
Want to know how? Keep reading to learn where we’re at in terms of a cure and 2 ways you can support the search.
Is There a Cure for Alopecia Areata?
AA can occur in a number of different ways and with inconsistent outcomes. In one landmark study, 67% of AA patients achieved a spontaneous complete durable remission within 12 months of developing a patch of hair loss. The remaining 33% developed chronic AA, which is defined as AA that lasts longer than one year.
Chronic AA is believed to affect 2% of the population, or 1 in 1000 people. While some individuals with chronic AA achieve complete remission, many continue to experience hair loss for years.
There’s no known cure for alopecia areata and treatment can be tricky. What works for one might not work for another, and some people don’t respond to treatment at all. AA is a difficult condition to predict, and part of the problem with predicting the course of AA and what treatments will help, is that there’s so little known about it.
2 Ways to Support the Search for a Cure
What we do know about AA is that it’s an auto-immune condition. AA hair loss is the result of the immune system attacking the hair follicle. What we don’t know about AA is what triggers the immune system to do that and how to reverse it.
So how do we figure that out? We keep looking for a cure. But, in order to do so, we need your support. You can help with just two simple actions.
1. Create Awareness
When people with AA and their families and friends make efforts to inform their communities through AA awareness, it makes a big impact.
When people learn that there is no cure, or even a proven treatment, they often want to help. That’s especially true with fundraising efforts, the proceeds of which can be used to support a cure for AA by funding research and advocacy.
Creating awareness has additional effects that go beyond finding a cure. For example, with increased awareness about AA, there is less stigma and misconception around hair loss. In this way, people with AA are less likely to experience prejudice.
Creating awareness about AA can be anything from showing a video about AA to your child’s classroom or participating in Alopecia Awareness week in November or in other initiatives executed throughout the year held by AAAF.. Talk to your friends, families, neighbours, and colleagues to help them understand AA, and you’ll be doing your part to support the search for a cure.
2. Donate to AAAF
Founded in 2010, the goal of the AAAF has always been to improve the lives of people living with AA. We accomplish this by providing support to people with AA and their families, creating public awareness about AA, and funding research into potential treatments and cures.
In the last ten years, we’ve provided financial support to various research efforts looking at possible cures and treatments for AA, including:
Sponsorship of a two-year investigation into the efficacy of cycosporin A and Tofacitinib as a treatment for AA.
Grant funding for research into AA treatment with Janus Kinase (JAK) inhibitors.
Grant funding for research into skin resident memory T cells in AA.
We’ve also participated in numerous trials and started a program for a grant with the Australia Dermatologist College. That program helps fund a yearly research paper on AA.
AAAF doesn’t receive funding from any level of government. We rely on your support to help fund the research that gets scientists closer to finding a cure for AA. That’s how donating to the AAAF helps support the search for a cure for AA.
More Info on AAAF
There isn’t currently a cure for AA, but that doesn’t mean there isn’t hope. We’ve come a long way in terms of what we know about this condition, and with your support, we can continue to fund the research that gets us closer to a cure.