Walk in my shoes, by Jo.

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.

EARLY DAYS

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.

THE BREAKTHROUGH

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.

REFERENCE

AND TODAY

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

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!

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Alopecia and Representation

The new production of Roald Dahl’s The Witches has sparked conversation and controversy with it’s depiction of the Grand High Witch, played by Anne Hathaway.

(Spoilers ahead for those who haven’t read The Witches or seen the film yet)

One memorable scene in Dahl’s original novel includes the main character overhearing the evil plots of the titular Witches. The scene is tense and sinister, as our main character hides in a cupboard and hears the plans while trying not to be discovered. Classic rising tension. As part of the reveal of these terrifying villains, they shed their normal human disguises to show cat-like claws and itchy bald heads.

Sigh.

Continue reading “Alopecia and Representation”

Alopecia Video Resources

AAAF have a huge range of information and resources available on our website, including latest research updates, support material, and our biannual newsletter. This blog is also home to some fantastic tips, tricks and techniques to help you on your alopecia journey under our “Advice” tab.

But did you know that AAAF have a YouTube channel with hours of video resources all about living with a form of Alopecia Areata? Whether you’re looking for a super quick animated explanation of how Alopecia Areata works, a detailed makeup tutorial, or discussion of how to tell your friends about the condition, we have great video resources that can help.

We’ve collected some of the most popular videos to share with you here. What kinds of videos would you like to see us do next? let us know in the comments!

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9 Alopecia Instagrammers You Need To Follow

Social media has helped to bring alopecia awareness to the internet. The online alopecia community is such an amazing resource for anyone wanting to feel uplifted, informed, supported and connected to thousands of other people out there with alopecia.

We wanted to celebrate that community by sharing with you some of our favourite people championing alopecia on Instagram! There are so many amazing people out there making amazing content – we couldn’t possibly fit them all into one blog post! Is there someone you’re loving in the online world of alopecia who we haven’t listed here? Don’t be shy – drop us a comment so we can check them out!

(Oh, and you can also find us on insta right here at @alopeciaaaaf!)

Continue reading “9 Alopecia Instagrammers You Need To Follow”

The Waterhouse Girl and Interview with Sue Hampton

Sue Hampton 4Review by Linsey Painter. 

Daisy Waterhouse has a lot going on. Her parents are getting a divorce, her best friend, Jess is moving to Australia, she has to move house, change schools and she’s got a secret, Daisy is losing her hair. There’s a shiny, smooth bald patch at the back of her head. For the first time in her life she is happy that her hair is nothing like the perfectly groomed hair of the Waterhouse girls in her favourite paintings. It’s wild and massively abundant so maybe having one bald patch won’t make any difference.

But when her hair starts clogging up the shower drain and her hairbrush, Daisy knows something big is happening. The only place she can reveal her true feelings in is her diary but secrets have a habit of being exposed. Will Daisy be strong enough when hers comes out into the open?

Continue reading “The Waterhouse Girl and Interview with Sue Hampton”

“Alopecian” – A Language Guide

ALOPECIAN
[Pronunciation: al-uh-pee-shee-an]

Noun (Informal): A person who has a form of the hair loss condition known as Alopecia or Alopecia Areata.

Plural: Alopecians

Examples:

  • Alopecian women and girls often have a very different experience with the condition than men and boys, but the common assumption that alopecia is ‘easier’ for males is incorrect.
  • Having been an alopecian for most of my life, I have a very different experience in crowded, public spaces than people who do not have such a visible difference.
  • As an alopecian, I loathe being called an alopecia sufferer.

Continue reading ““Alopecian” – A Language Guide”

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