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.

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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.

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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.
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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.

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Art and Alopecia

Creative practices like art, music, writing and dance have long been known to help support mental health. Arts therapy is a recognized practice with many potential benefits, known to help with communication, self-image, personal development and coping skills.

Throughout the challenges 2020, we’ve seen how arts and creative practices have been very helpful for individuals and families. A range of creative practices have seen a swell in popularity, from mindful colouring, paint-by-numbers for adults and learning viral online dances. Art, dance and music can be great learning tools for young kids and an opportunity for self-expression or exploring emotions for teens and adults.

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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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Alopecia Areata and the Battle Against Bad Information

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.

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Ten Truths from my Alopecia Journey

80427854_10157275466804398_3913179368066646016_nMichelle Ogbonna

My Alopecia Journey began many years ago, when I was 15 years old,  in Year 10 at High School. I was in the Drama Club, and one evening as we prepared for a performance, someone styling my hair exclaimed: “Oh look , you have a little bald spot right at the back of your head !” A few people laughed, including me, and I didn’t give it much thought, as it stayed the same for about 2 years.

During Year 12,  however, a few more little patches appeared, and in the year after I left school, those few little patches became many little patches, which joined together to become big patches, and I could no longer hide them with careful styling.

I wore hats and scarves to hide my patchy scalp,  and struggled terribly with anxiety and depression.

During that time, there were many lies I told myself and believed about myself and my future.

Now,  I am  43 years old, and my life is far different than I had expected it would be. Here are 10 of those lies and 10 of the truths that have replaced them.

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My Alopecia Story – Max’s Journey

I don’t exactly remember when I started to lose my hair. I know it happened around 2014, when I was about 11. I also know it started like it did for any other any kid. In patches across my head.

When it began, I honestly couldn’t have cared less. Hair wasn’t a vital organ and I wouldn’t die if I lost it, unlike some other people in my grade who certainly would have.  My alopecia then took a turn for the worse in 2017 when I was 14 and so I decided to shave my head as all my hair was going to fall out anyway. However, it didn’t bother any of my friends. After that, my eyebrows fell out and then that was it.

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