How to manage a bad day with alopecia

Many of us who have been diagnosed with alopecia areata can attest to the fact that depressive episodes or a diagnosis of depression can be quite common as we manage the emotions alopecia areata can bring up. 

Although there’s an increasing amount of research and information around mental health in general, there isn’t a great deal of research on the psychological problems created by hair loss. The evidence we do have suggests that hair loss can cause a wide variety of psychosocial consequences. Some of the evidence shows that such hair loss can be psychologically damaging.   

Hair loss can cause emotional suffering, decreased self-esteem, body image and confidence. This can lead to problems in a persona’s personal, social, and work life.

There’s also evidence that people with hair loss are more susceptible to the development of mental health conditions such as depression, anxiety, social phobia, or paranoid disorders.  

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! 

Sydneyhttp://www.facebook.com/groups/253267248063760/ 
Melbournehttp://www.facebook.com/groups/324140794330058/
Adelaidehttps://www.facebook.com/groups/191926040992952/
Brisbanehttps://www.facebook.com/groups/360044287470628/
Perthhttps://www.facebook.com/groups/482588098533568/
ACThttps://www.facebook.com/groups/1386723811590647/
TAShttps://www.facebook.com/groups/355292571629842/
Men’s Alopecia Support Group – Australia Widehttps://www.facebook.com/groups/158070451460216/ 
Teen Alopecia Support Group – Age 13-23, Australia Widehttps://www.facebook.com/groups/AlopeciaTeenSupportAustralia/

Download support brochures here https://aaaf.org.au/support-material/ 

If you need help or support immediately, we recommend reaching out to the following organisations.

Is There a Cure? 2 Ways to Support the Search for a Cure for Alopecia

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. 

Consider donating to the AAAF today and help support our mission to improve the lives of people living with AA and their families.

Remission Statistics for Alopecia Areata

Alopecia areata (AA) is more common than you might think. Indeed, it’s thought to effect 2% of the population at some point in their lifetime.

For those who have been diagnosed with AA, the rates of remission are often a more pressing concern than incidence rates. However, the research that exists around remission rates is not only hard to find but it can also be confusing.

Research on remission rates in AA patients can be an empowering piece of knowledge, which is why we’ve invested in funding this study that contains valuable information for our community. In this article, we’re presenting all the most important statistics found in the AAAF-funded report Treatment of alopecia areata: An Australian expert consensus statement to help empower you with that knowledge.

Degrees of Alopecia Areata

There are many types of Alopecia Areata. They are generally grouped by what area of the body they affect, or the pattern of the hair loss. The three most common forms are:

  • Alopecia Areata – patchy loss of hair on the scalp
  • Alopecia Totalis – complete or mostly complete loss of hair on the scalp
  • Alopecia Universalis – complete loss of all hair including brows, lashes and body hair

In some individuals, AA may present as one to five patches of hair loss that resolve themselves within 6

to 12 months. In others, AA becomes a chronic disorder characterized by multiple hair loss patches with

relapse and remission occurring over the course of many years. It may also present as total, or universal,

hair loss as described above.

Remission Statistics for Alopecia Areata

In the research report Treatment of alopecia areata: An Australian expert consensus statement, William C. Cranwell et al., discuss the remission rates presented in a landmark 1963 paper by Tadayo Ikeda. 

Between 1947 and 1963, Ikeda studied 1,989 alopecia patients in Kyoto, Japan. Ikeda found that among those with hair loss:

  • 40% will experience one patch of hair loss and will spontaneously enter remission within six months of diagnosis. 
  • 27% will experience more than one patch but still achieve remission within 12 months.
  • 33% will develop chronic AA.

Chronic AA is AA that lasts longer than one year. The prevalence is approximately 1 in 1000 people and 2% of those have a risk of developing AA for their lifetime. 

Chronic AA patients tend to develop multiple patches of hair loss which persists through many years and they may never enter complete remission. In fact, Ikeda found that without systemic treatment, 55% of patients with chronic AA will have persistent multifocal relapsing and remitting AA. A further 30% of patients will develop alopecia totalis (AT) and 15% will develop alopecia universalis (AU). 

Remission Statistics for Alopecia Areata in Children  

Remission statistics for children with AA differ from the above. For example, one study cited in Cranwell et al., involved 87 children between the ages of 7 and 12.

Of these children, 57% completely recovered from their hair loss within 3 years of their initial diagnosis. 21.5% of those children recovered and then relapsed, eventually developing chronic AA. Another 21.5% of those children developed chronic AA with no initial recovery.

Does Treatment Help Cure Alopecia Areata or Improve Remission Rates?

The medical world differentiates between cures and treatments. While a cure completely removes a disease from an individual, a treatment is intended to improve the condition and the quality of life of the individual.

With that said, there is no cure for AA but there are treatments. The goal of said treatment is to hinder the progression of the disease and to reverse any hair loss that has already occurred. 

However, there is no verifiable evidence that treatment has any impact on the natural course of AA. That is, medical professionals are unsure to what degree treatment of an acute AA episode prevents the disease from developing into a chronic condition. Patients can recover from acute AA or experience complete remission from chronic AA and still experience a relapse in their future. 

That does not mean that treatment is not important or useful. For example, one analysis of 68 chronic AA patients who received systemic treatment found that the rate of developing AT or AU was reduced to 17.6%. At approximately 45%, that rate was higher in the Ikeda paper. While the figures demonstrate a need for further investigation, they also suggest that treatment of chronic AA may help reduce the risk for developing AT and/or AU.

Looking for More Stats and Info on AA?

Receiving an AA diagnosis can be confusing and difficult. But educating yourself around the disease and potential treatments is one way to feel empowered. That’s especially true when it comes to remission rates, which can offer hope when it seems like there is none.

The AAAF believes that our most important task is to spread awareness and education about alopecia, and you are an essential 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.

Where to Find Financial Support for Wigs in Australia

When hair loss occurs, we know it can impact your self-esteem, self-image, and confidence.

One of the most common ways of combatting the physical, emotional, and mental impact of alopecia areata is to purchase a wig. By giving the outward appearance of a full head of hair, they can boost confidence, help avoid awkward questions, and even protect the skin from the elements.

But wigs in Australia are costly. They can cost anywhere from $80 to thousands of dollars, plus the additional 10% goods and services tax (which can add up to quite a bit depending on the cost of the wig). Depending on how well they’re taken care of, a wig can last as little as 5 months to as long as 5 years, but eventually, they need to be replaced.

Those costs mean that there’s a great segment of the alopecia areata community that cannot access this potentially life-changing medical device. With all of the challenges individual’s with alopecia areata already face, paying for a wig shouldn’t be one of them. The good news is, there is financial support available.

Tax Rebates and Subsidies

For adults requiring a wig, there are government-sponsored programs that can help you cover the costs in the form of rebates and subsidies.

Most individuals will qualify for a tax rebate on their wig under the Taxation Ruling TR93/34. Section 159P of this ruling allows for tax rebates on net medical expenses. Those expenses include the cost of medical or surgical appliances that are prescribed by a qualified medical professional, such as a medical or surgical wig. Individuals are entitled to a rebate for net medical expenses that exceed $1,000.

There are also a number of state subsidies available, depending on the state in which you live:

  • New South Wales (NSW) offers eligible candidates assistive technology like wigs through the Enable NSW program. 
  • Victoria (VIC) provides subsidized aids and equipment through the State-Wide Equipment Program (SWEP).
  • Tasmania (TAS) has financial assistance available for patients of alopecia who have a DHA Pensioner Concession Card or DHA Health Care Card and are referred by a doctor.
  • South Australia (SA) supplies wigs or contributes toward the purchase of wigs for eligible clients under the Department for Families and Communities (DFC) Equipment Program.

Each of these programs has their own eligibility requirements, often depending on what kind of wig you’re looking for and your financial situation. Program requirements and benefits will differ from state to state, and Western Australia (WA), Queensland (QLD), Northern Territory (NT), and Australia Capital Territory (ACT) don’t provide any such service.

Private Health Insurance

If you have a Health Fund provider, you may be eligible for assistance through your extra coverage.  The provisions under an extra coverage policy may allow the policy holder to file an insurance claim to cover the full or partial cost of a cranial prothesis. Typically, this only applies to individuals who have lost their hair due to medical reasons such as chemotherapy, trichotillomania, or alopecia.

While some health insurance policies require the policy holder to pay for their prothesis and then reimburse them, others will provide you with the money prior to your purchase. The availability of this form of financial assistance varies according to provider, so you’ll have to check with your Health Fund to find out if you can make a claim. Look for a list of Health Fund providers on the Private Health Insurance Ombudsmen’s website.

Financial Support for Children

Wigs for kids grant

Alopecia often presents itself in childhood. When it presents during this important period of self-discovery and socialization, it can cause confusion, fear, and a sense of isolation from peers. This is why ensuring children with alopecia can access wigs is incredibly important work.

There are a number of grant programs that children with alopecia may be eligible for. For example, the AAAF’s Wigs for Kids grant program is available to children under the age of 17 who have alopecia areata.  On top of financial assistance, this program provides all of the information, service, and support that any child who wishes to wear a wig could possibly need.

Low Cost Wigs

In addition to the financial support options listed above, there are also a number of places to find low cost wigs that are more affordable. 

In keeping with their commitment to improve the lives of people with alopecia areata, the AAAF offers a range of synthetic wigs and they keep the cost of these wigs exceedingly low. Indeed, they’re usually sold for well below cost price and they even offer free shipping. Eligible candidates can use these when they’re new to the world of wigs and looking to try some options that are right for them.

Individual wig suppliers all have their own approach when it comes to discounts and payments, but it’s not unheard of to find a wig provider who is willing to arrange a payment plan. There are also a number of wig suppliers that participate in a voucher program approved by the Public Hospital System. You can talk to a nurse or doctor to find out if your hospital has vouchers and check online to see what suppliers in your area qualify. 

More Help with Wigs

A beautiful wig can cost hundreds and even thousands of dollars, putting them out of reach for a significant portion of the alopecia community. But there is financial support available, if you just know where to look. Consider applying for tax rebates, state subsidies, and grant programs, or looking for low cost wigs to offset the financial burden that wigs can represent.

And for more information and help with wigs, be sure to check out the AAAF wig resources page.

Rare Disease Day 2021

Did you know alopecia areata (AA) falls under the category of Genetic and Rare Diseases? As an autoimmune disease in which the immune system mistakenly attacks the hair follicles, affecting roughly 2% of the population at some point in their lifetime, it sure does.  

Rare is strong.

Rare is many. 

Rare is proud. 

AAAF is proud to represent individuals with Alopecia Areata, a rare disease. We are proud to be surrounded by strong individuals, just like YOU.

To support you, the GSNV will be holding a virtual event to raise awareness amongst the general public and anyone who has an interest in rare diseases. Stay up to date on event information by clicking here. 

Their theme is “Who is on your team?”, presenting a series of conversations lead by our CEO Monica Ferrie and focusing on strengthening the capacity of individuals within the Genetic, Undiagnosed and Rare Disease communities.

Head on over to The Genetic Support Network of Victoria (GSNV) to check it out. 

This means that Feb 28 is a special day for us. It is Rare Disease Day 2021! We were so excited by GSNV’s theme this year ¨Who´s on your team?¨

So, who´s on your team? 

Maybe it is your doctor, your family, friends pr pets. Of course… Don’t forget us, we are always on your team. 

See our video ‘Who is on your team?’ below: 

Wigs 101

Have you been wondering how to choose the best wig for you? Do you need to know how to care for your new, beautiful wig? Not sure which type or style of wig is best for you? Are you wondering if you will be able to do all your favorite hairstyles in your new wig? You might be thinking “can you put a wig up in a ponytail?” or, “can I wear my glasses with my wig?”

Wigs can be a very valuable tool in managing our alopecia journey. But choosing the right wig, learning how to care for it and style it, and understanding how a wig will fit into your lifestyle can make this process difficult. 

We’ve created this series of videos to address some of these issues, and hopefully, give you the tools to find the best option for you. Check out these videos, and if you have questions, let us know in the comments!

My Alopecia Journey – Kerri

Kerri was one of the recipients of the AAAF Sponsorship program which ran in 2019 and early 2020. She is a talented artist who put together a special exhibition about her journey with this condition titled Understanding Alopecia.

I went through a very stressful time 6 months before my hair started falling out, I never thought anything of it and kept on with life as you do. I did have a bit of hair loss, but I never really took much notice until I went to get my hair cut one day and the hair dresser told me she had found two round patches on the back of my head about the size of a twenty and ten cent piece. She suggested that I go to the doctor and said it could be alopecia, I had never heard of Alopecia before so this started a strong relationship with google researching Alopecia. This period of time was the worse as I didn’t really know what was wrong with me, the unknown and thinking it could be something worse was worrying.

Continue reading “My Alopecia Journey – Kerri”

Alopecia and the New School Year

Happy new year! A new school year is just around the corner. Many families will be prepping for the usual concerns – being sure to have the right books, enough pens, and shoes sturdy enough to (hopefully) make it through the whole year.

For families living with alopecia, the new school year can have some extra considerations. Whether you’ve had alopecia for years, or have experienced hair loss over the holidays; whether you’re heading into a new year at the same school or have made a big transition, we hope this article can be a helpful guide. The new school year doesn’t have to be stressful, and there is a lot you can do to set up for a good term.

Continue reading “Alopecia and the New School Year”

Wigs – Where to start?

Choosing the right wig for you is a very personal decision. If you’ve never shopped for wigs before, it can also be overwhelming or stressful. But it doesn’t need to be. This guide is here to help you understand your options before you get stared.

Questions to Consider

Which wig will be best for you depends on your lifestyle and your preferences. We recommend doing some research and deciding what your priorities are before you get started. Here are some questions to think about:

  • What’s your budget? Costs of wigs can be very varied.
  • How soon do you want or need your new wig? Custom wigs are made to order, and therefore take more time to make. Some can take well over a year, so understand what to expect and what you need.
  • Do you need your hairpiece to stay on during sport or physical activity?
  • Do you want one style that you stick with for a long time, or would you rather mix and match your look?
  • Are you able to take care of the hairpiece? Kids are especially prone to bring rough on their wigs, which can shorten the lifespan of the wig. Factor this into your budgetary decisions.
  • Do you want to sleep in your wig? Sleeping in wigs can shorten their lifespan, so it’s not usually recommend. If you feel you need to sleep in a wig, be aware that it may need replacing much sooner, and factor that replacement cost into your budget.
  • Is it really hot or humid where you live? Some styles of wig breathe more than others, and shorter hair styles can feel lighter on your neck.
Continue reading “Wigs – Where to start?”

Summer Reading List from Love, Alopecia

Summer is here. Can you hear it? It’s the sound of a deckchair, hammock or cozy couch calling your name. All you need it some ice tea and a good book.

This reading list isn’t about the newest releases or best sellers, but a collection of books which speak to us and share something meaningful about the experience of alopecia.

Do you have a book that helped you on your hair loss journey? Share it in the comments!

Continue reading “Summer Reading List from Love, Alopecia”

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