The Tropical Challenge – Beating the Heat while living with Alopecia

alopecia-and-hot-weather-author-linseyBy Linsey

Living in the tropics and coping with alopecia has been an interesting challenge for me.

I grew up in Indonesia practically on the equator. It was hot, sticky and 100% humidity. When I first got a wig I still had quite a lot of hair on my head— hair that I was not ready to give up on or shave off. I was thirteen and I didn’t want anyone to know I was going bald. I was so ashamed. So I wore my wig on top of my hair, sometimes even to bed. I broke out into heat rash on my head and my face. My skin was not happy and neither was I.

Later on in life when I was married and in my mid-twenties I moved back to the tropics. I lived in Papua New Guinea. My hair fell out again, this time it all went. At the same time I was a lot more confident and I had a husband who loved me no matter if I had hair or not. I decided that I would go wigless and instead wore colourful lightweight cotton scarves. They were a lot cooler on my head and my skin thanked me for it. No heat rashes, but I had to carry an umbrella with me where ever I went. Scarves to do not protect your skin from UV!

Ten years on and I now live in Cairns, once again in the tropics. I love the warmth and my sensitive eczema-prone skin adores the humidity that keeps my skin moist. My alopecia progressed to alopecia universalis and I lost my eyebrows and eyelashes. I got eyebrow and eyeliner tattoos and learnt to do my makeup so I feel comfortable with how my eyes are framed. After much counselling and inner healing I am so thankful that I can now go bald on the hottest days. I wear a wig when I want to and the scarves and hats come out if I feel like a bit of colour.

We all know that most of our body heat escapes through our heads so wearing something hot like a wig can be incredibly taxing when our bodies need to let off steam. Even wearing a hat can be very hot. On the other hand being able to take something off your head can be one of the quickest ways to cool down. So when the heat is a bit unbearable a cool cloth on my head or a quick dunk under the tap is amazing!

I’ve also learnt that my head is incredibly sensitive to heat. I try not to go out into the blazing sun too much or I end up with a horrific headache. So, I try and be mindful of where I stand when I’m outside making sure I’ve got more to shelter me than just something extra on my head.

Living in the tropics can be unbearable at times and not just for me in a wig, for everyone. Maybe I’m the lucky one who can take off my wig/hat/scarf and just cool down extra fast.

I watched a really great documentary that encouraged me, it’s called ‘Embrace’ by Taryn Brumfitt. It reminded me that we are all different and unique. Everyone has something that they are dealing with, something that they might not like about themselves. It’s not easy to deal but we are not alone.

Bald Girl in the Dating World

A reflection of my journey, a bald girl in the dating world.

I am Bianca and I’m 41 and single.
Some time ago I shaved my head and started living my life as a bald woman with Alopecia. The grieving that followed that was indescribable.

Over here in my bubble I assumed I was no longer feminine, I felt ugly.

I looked in the mirror and was mortified at what was looking back at me, I no longer knew who I was. The image I had known as “me” for as long as I can remember was gone and something very different, something very confronting stared back at me. When I went out to bars and clubs, men and women stared at me, in fact whenever I left the house people stared at me.

I started to tell myself I was doomed to be alone forever, who could seriously wake up beside a bald woman and think that I was a catch, I didn’t have hair, my femininity had left the building, poof, like that I was no longer soft, I was flawed, undesirable, looked harsh and bold. Could hair really rob me of this womanly characteristic, femininity? This would have a huge impact on my dating life, for someone reasonably successful at dating I was done for, or was I?

Now this got me thinking, this could stop my life and it seriously could. I could crumble and never leave the house, become invisible and a mere shadow of who I once was. My only other choice was to saddle up and see where this lead, after all it was who I was now and not a lot was going to change that! I threw myself out there as a social experiment and started dating again as uncomfortable as that was. It really took something and I risked a lot of rejection and painful judgment but I felt the fear and did it regardless.

I was honest and positive and as I said the words over and over again, I have alopecia, it felt surreal and foreign but I kept saying it until it was apart of me. Like saying I have blonde hair or I am 156cm in height. It became a part of who I now was and it was there comfort grew. It was no longer something that I was suffering or something that was happening to me. In fact my Tinder profile reads, “All photos are recent, and yes, I shave my head, no I don’t have cancer, I have alopecia. I am at peace with who I am so if you aren’t, that’s ok, keep swiping, thanks for stopping by.

Yes it sparked lots of questions but it also took a very interesting turn and taught me a very deep lesson or two, self-love and self-expression. Even though I knew these things already, to really live true to them was a very different matter. I was complimented for my courage and my bravery, people were even empowered and inspired to talk to me, just to say hello. They saw in me something that many people are scared to express, a deep sense of authenticity. I ended up with friends and kind people to chat to and people who were generally interested in me as a person. The rest just kept swiping!

Yes some men are completely turned off by me having no hair that goes without saying. Some were shallow and even rude. When I think about it, it is more a preference than a personal insult and I have certain preferences just the same, everyone does. There is however a healthy dose of tact that comes with the delivery of those preferences, which some men didn’t have but most did! Men did agree that hair symbolizes femininity; they also agreed that woman hide behind their appearance and how boring that is. They also agreed it was a turn on and refreshing to see a woman in her power and confident within herself flaws and all.

Now this I found refreshing and empowering and deep within me emerged a sense of duty to stand proud and represent all the bald women. I felt like a modern day Joan of Arc perhaps, in the dating sea of shallowness. Everyone searching and yearning for someone special to grow old with, to have his or her hearts filled with joy. I represented a light of hope, someone real and flawed but standing proud nonetheless. I was someone real and tangible they could relate to, someone who understands them.

So this had me thinking, does the root really lie with my own projection or thoughts around how I feel about myself?  How society and beliefs have formed what I see as beautiful, absolutely! Are women more judgmental of each other, resulting in us being extremely harsh on ourselves? The research I did proves that men are not as confronted by it nor are they as judgmental as I first thought they would be. Women are more disturbed and mortified than men at the thought of a woman having no hair. Funny that! Its ironic society has us believe that no matter what we do we just aren’t good enough. We have been taught to fear and hate ourselves, to be in competition with others and ourselves constantly. It has been ingrained in our belief system from birth; every sense of our self is under judgment.

I believe we have become emotionally unavailable and desensitized, it’s easier to be detached; it’s safer then rejection in a confusing world of ‘perfect’. The lines are extremely blurred and with confused heads and hearts we all just want to be loved. We ultimately want connection, to feel a sense of belonging; we don’t want to be lonely in a world so that has us all so disconnected to one another. We are all trying to express ourselves and be understood in a world that portrays such a distorted version of what’s actually achievable.

So my thinking has been altered. What I once believed when I looked in the mirror, thinking I was doomed to be alone forever is so far removed from reality. Shaved head, no hair, short hair, long hair, short and curvy, tall and curvy, athletic and thin, black, white, asian, does any of it really matter except to ourselves? It is all purely our own idea of beauty, an image we measure up to. Does that mean without hair am I no longer attractive, no! In fact it has been a talking point that starts a conversation and then when they actually get to know me, it hasn’t made a squat of difference to those that are worth creating a connection with!

I would have to say it has been more in my head that I am unattractive and unlovable. And I had these exact thoughts well before I lost my hair. Society has me feel this way no matter how I present to the world. If it were not hair it would be something else, weight, height, eye colour, giggly thighs, fat arse, big ears, small breasts, large breasts, we will always find something that makes us not enough. Having no hair is just another physical realm we can grasp to that confirms it, justifies it because society tells me I’m now different and different is undesirable.

So I hope to show you that for the most part it’s how you feel about yourself. Days I feel ugly and self conscious and I walk down the street, I feel people looking at me, I’m looking for reasons to confirm my ugliness, this is how the mind works, we are looking for validation. This has me sink into a pit of misery and hide myself from the world. Days when I’m feeling empowered and beautiful, I hold my head high, I walk with purpose and I smile and make eye contact with people and the world is a beautiful damn place to exist. This has me want to be alive and be present in the world.

I’m choosing to jump in, I’m putting myself out there and smashing through the façade of what beauty is, I’m standing strong and being the difference. I am standing tall and being all the bald women out there who aren’t confident enough, who aren’t ready. I am creating a new normality, I am loving who I am at every given moment and I’m saying I am enough just as I am. Some days I feel quite the opposite but I’m choosing to redirect my thoughts to the positive because that’s where the magic happens right?

We can change who we are out there in the world by loving ourselves firstly and standing strong and proud and just showing anyway! I’m not saying we don’t have down days like any other human being but remember its all an inside job, the negative self talk, the positive self talk, confidence, the shame, the hate, the love. It’s all an inside job that takes constant reprogramming of the brain and thoughts. It’s a choice daily, and that’s choosing who you are, just as you are, every single day!

What you think you become after all and I am so much more than the hair on my head or the giggly bits that move too much when I run and that won’t stop me from running. I am the heart that I have and every part of the journey that I have walked. It may take me longer to find my twin flame but I’m learning how important it is to truly love myself first and foremost on this path and that’s invaluable. It is what makes me a more desirable and richer person in the process.

If you are out there, bald and dating, rise and be proud because you have something very unique to offer, you have nothing to hide behind, come forth with pure personality and essence. You already have a life partner within yourself. Rise my beauty and let your bald head shine!! You are gorgeous, whole and rich just as you are.

From a bald girl in the dating world.

Taking the Plunge: Telling people about your Alopecia

There was a time in my life where I would’ve preferred to run 10 km in spandex through Melbourne CBD than tell any of my friends about having Alopecia. Luckily, as I got older, I realised that people probably wouldn’t act like I’d committed a mortal sin for having the audacity to get a chronic illness. It was a process. That being said, I’ve had some amazing experiences and some not as good experiences when telling friends about this condition. Whether you want to tell your whole school, someone at work, or a new friend or partner about your alopecia, it can feel pretty scary. But with the right preparation and the proper tools, it doesn’t have to be. Learn from my mistakes Young Padawan and stock up your arsenal of awareness weapons.

-Stef, AAAF Support Ambassador

 

The Key Information about Alopecia Areata

You know that moment when you think you’ve been coherent and then you realise all you’ve done is mumbled at the floor, yelled ALOPECIA and then looked at the other person expectantly? No, just me? Well, there are a few things we can do to avoid that ‘huh?!’ facial expression we get when nerves got the better of us. It’s all about getting the facts straight and doing a bit of preparation before you take the plunge. Here are some things to cover.

  • What is Alopecia?

Alopecia is a condition where your hair falls out. There are three main kinds: Alopecia Areata, which is where you get patches of hair loss on your head, Alopecia Totalis, where all the hair on the head falls out and Alopecia Universalis where you lose all your hair on your entire body, including your eyelashes and eyebrows. Hair loss is the only symptom. I have …

  • Is it contagious?

It is our hope to infect as many people as humanly possible so that the whole world will one day be egg heads like us Alopecians. KIDDING. You can yank their chain for a bit, but eventually tell them that they won’t be able to catch it from you.

  • What causes the hair to fall out?

Everyone has an army of soldiers in their bodies called the immune system. It’s supposed to protect us from nasty things like coughs and colds. Unfortunately, our immune systems are a bit overzealous and attack our hair as well. That’s why it falls out.

  • Is there a cure?

There is no cure and few treatments. However, there is this fabulous charity who is trying to change that, so you can head to their website and find out how you can help (hint, hint.)

  • Will it ever grow back?

We don’t know if our hair will ever grow back. Sometimes it does and sometimes it doesn’t. If the world is feeling particularly mean it can grow back and fall out many times.

 

Everyone is Different

There isn’t a foolproof ‘how to tell you friends formula.’ If there was, I would probably be selling it instead. Try a couple of different ways of doing it and see what works for you. You can reflect on your experiences by asking yourself these questions:

  • What went well?
  • What didn’t go as well?
  • What could I do differently so that what went wrong doesn’t happen next time?

You can do it one on one or just rip off the band-aid and do it in a group. Do whatever makes you feel the most comfortable. You’re already taking a massive step so you don’t need to make it harder for yourself by doing what you think is the ‘right’ thing to do.

I know it sucks, but you’ll probably get a variety of different reactions from people. Just recently someone thought me having Alopecia was wicked and that I looked stunning in my headscarf. Another looked at me and said ‘nahh not a fan of the ‘bandana thing’. I’ve found telling people an awesome way to filter out the good friends from the ones that give you grief down the track. I just want to make the really clear:

It should not matter to your friends that you don’t have hair.

The aim of being honest about your experiences is getting to a place where you can say to someone, ‘I’m going out in a headscarf today and I’m feeling really nervous’ or ‘I’m having a bad time right now and need your support.’  The worst thing in the world is feeling like you have to go through this alone. You don’t. There are people out there who will have your back. You’re awesome, and worthy of love and friendship.

The Telling Friends Toolbox

Here are the things I need when telling someone I have Alopecia.

  • A stable base of support so that there isn’t just one person supporting you (vital)
  • A plan of what you’re going to say so your nerves don’t get the better of you
  • A safe and neutral place to do it.
  • A good segue from normal conversation. I can’t even tell you the number of times I didn’t tell someone because I ‘hadn’t found the right moment’ in the conversation.
  • Make it clear that they can ask you questions and that you are more than happy to talk about it. I didn’t make that clear to one of my friends and she went about 5 months thinking that my wig was sewn onto my head. My bad.
  • You might have to bring it up a couple of times before friends are comfortable discussing Alopecia with you. I like to crack a joke about how boring it would be to be stuck with a hairstyle or how I never have bad hair days. Humour is a great way of lightening the mood.
  • A list of people you can call who know about your condition, just in case it doesn’t go well.
  • Create a little action plan of what you’ll do just in case the worst case scenario whizzing through your head actually happens. It’s could look a little something like this:
    • Call a friend or family member who knows about your condition so you can talk about it.
    • Do something nice for yourself. Watch that episode of Game of Thrones you’ve been saving. Read the book that’s been collecting dust on your bedside table. Do something which makes you feel good about yourself.
    • Reflect on what happened. Did you not give them the tool they needed to properly support you or are they a good person to have in your life?

You’re a badass

Now repeat after me: ‘I am a badass.’

And once more. ‘I am a badass.’

You got this covered, but just in case I’m going to give you one last tip to take away.

Be mindful of what your body is doing during these tough conversations. Your posture actually affects how confident and powerful you feel. Every time you want to hunch over and cross your arms say, ‘no!’ Square your shoulders, lift your chin and straighten your back – within reason of course. You don’t want to suddenly look like a drill sergeant.

That’s all from me, so be bold. Be bald. Be you.

Love, Alopecia

 

What NOT to say to someone with Alopecia

gemmaHi, I’m Gemma. I’m 22 years old and I’m a registered nurse. I first lost my hair last year when I was 21 and working at a nursing home. I’d worked at this nursing home for 2 years already so I was well known by all the residents. However, I soon discovered that sometimes elderly people say whatever they want without really thinking about it, which, let’s face it, if I had lived a whole life censoring myself in society, I’d stop trying when I was old too.

One day I was having a particularly emotionally hard day at work, and I decided to write a response to every comment that had been said to me since I started losing my hair, and created this list of things not to say to someone with alopecia.

  1. “Oh but your hair was so pretty!”

Yes it was. Thank you for reminding me of the ghost of hairstyles past. My hair will be pretty if it grows back, and my face is still pretty even if it doesn’t.

  1. “But I liked your hair before”

Congratulations, so did I. I LOVED my hair; it was long and bright pink and oh so pretty. So you can believe my devastation when it started to fall out. You can also trust me when I tell you that I didn’t shave it off just to spite you, or to take it away from your liking. I shaved my hair off because it was falling out in clumps the size of my fingers.

  1. “You looked better with hair”

Gosh darnit people. I know I looked pretty with hair. Most people do. But I don’t look not-pretty now, I just look different. Get that through your skull before you comment on mine.

  1. “It must be good to lose your hair in some places though, right?”

While I understand some people think it would be great to not have to shave their underarms, bikini line or legs, I still have to do all of the above. Dudes, I still have to pluck my moustache and random beard hairs that pop up every now and then like some sick reminder that I just can’t keep hair where I actually want it to be. So no, unfortunately, I take just as long landscaping my body as you do.

  1. As one of my residents kindly said to me: “Come back when you have hair”.

Well that’s just rude.

  1. “Did you shave it off for cancer research?”

While I admire the people who do, apparently shaving your hair off to raise money for cancer isn’t as impressive if you don’t really have hair to begin with.

  1. “My friend lost her hair and she did (insert various medication/treatment/voodoo here) and her hair came back!”

Congratulations to your friend I have never met. Maybe they didn’t have Alopecia, maybe they didn’t have my kind of Alopecia, maybe their Alopecia behaved differently. Alopecia is different for every person and while I am very happy for your friend, I really don’t need you to tell me about it. I’ve researched every treatment under the sun; I know what my options are.

  1. “But it will grow back, right?”

Maybe, maybe not. No one knows and if I sit around and hide and wait for it to grow back my life will suck so much there won’t be any use for it to grow back. It’s just hair.

  1. “Boys don’t like bald girls”

Who gives a flying fart? Anybody who has a problem with me being bald is not worth my time.

  1. “Well you know you can get a wig or something”

Waaaaaayyyyy ahead of you. I have 2, and they’re beautiful. But they are also hot, sometimes itchy, sometimes give me a headache and sometimes just do not cooperate with the weather. So if I want to wear them, I will. If I don’t, I won’t. But I’m not going to wear them all the time just because you don’t like seeing my scalp. Everyone has one, mine is just on display.

  1. “It must be so quick for you to get ready now!”

If I don’t shower, choose an outfit, deodorize, put on make up or do anything else, maybe. I still do everything you do, except instead of just putting on makeup and brushing my hair I have to stick fake hair on different parts of my skull/ take longer doing my make up to mimic hair and fight with a wig that takes 2 days to dry once washed and takes a long time to style before wearing.

Also, I would happily trade my alleged half an hour of sleep in for my hair back, any day.

  1. Unless you are family or a really close friend, do not say any kind of bald joke.

I will punch you in your perfectly hairy face.

  1. “It must be so much cooler for you”.

Surprisingly no. I still get just as hot and I actually look more gross because I have no hair to hide my shiny sweaty bald head.

  1. “You’re so brave, I don’t think I could pull off the bald look”

It doesn’t count as bravery when it’s not a choice. My options were to deal with it or curl up into a ball and cry. While I occasionally do the latter, for the most part I chose the former.

  1. “I’m jealous, it must be so easy for you”

Your perfectly hairy face is in danger of getting punched again…

  1. “You look like a chemo patient”

Maybe I do. But why does that matter? Who says looking like a chemo patient is a bad thing? I can’t help it, and FYI, people who go through chemo are damn badasses. Chemo is sucky and horrible and I would be lucky to be half as strong as these people.

  1. “Aren’t you afraid you’ll look like a boy?”

My giant busty chest would make me a very weird looking boy, and my mannerisms, face, voice and waist all point to me being a girl. And again, why does it matter? If it really makes you so uncomfortable that I don’t look like a feminine damsel, you’re living in the wrong century.

  1. “Are you sure you don’t want to keep trying the treatments”

I have had conversations with people much more informed than you. I have researched, talked to others who have done the treatments and talked to doctors. I am an informed, mature, adult young lady capable of making my own decisions. And it’s really none of your business anyway.

  1. “Your parents must be sad that you’re losing your hair”

Yes my parents have had to come to terms with seeing a different looking daughter to what they imagined they would. But my parents are awesome. They are loving, respectful and supportive of me and I couldn’t ask for anything more from them.

 

So if you bump into me on the street and you’re at a loss of what to say, here are some handy hints:

  • If you’re going to comment on something I can’t fix in 5 seconds, don’t say it.
  • Compliments are great. Compliments never fail.
  • I can already see in your eyes what you think about how I look. Just make sure something nice comes out of your mouth.
  • If you can’t say something nice don’t say anything at all.

gemma2

Beyond Brows – A Guide to Universalis

Alopecia Areata is never a smooth ride, but for those living with total or near total hair loss to the whole body (called Alopecia Areata Universalis) the condition can have extra hurdles. The loss of brows and lashes can be a blow to self-image and greatly effect self-esteem and confidence. Fortunately, there are many guides out there for how to manage these appearance issues with through makeup.   But body hair has a range of functions beyond appearance, and many alopecians find themselves surprised and unprepared for the ways universalis can affect them.

Never fear, my friends. Love, Alopecia has got your back. Drawing on many years of experience managing the weird, wonderful and oft overlooked side effects of all over hairlessness, we’ve created this super convenient list to help you, whether you’re new to the AU experience or an experienced veteran.

*Featured image titled ‘Sue’, from Daniel Regan’s The Alopecia Project. View the collection here.

Hair on the Head

What’s it for?: So why do humans have so much more hair on their head than the rest of their body anyway? There are a lot of theories on the subject, but the most popular is heat regulation. You’ve probably heard the fact that humans loose most of their body heat through their heads. That’s not entirely true , but we do feel very sensitive to changes in temperature our heads and faces, hands, and feet. This is likely due to the concentration of nerves in these areas and the fact that they’re further away from the bulk of the body.

So hair on the head doesn’t do a lot to keep you warm, but surprisingly actually, it does a lot to keep you cool. Humans do a lot of their sweating via the head, because brains really don’t like overheating. Human hair takes part in this cooling system by being extremely absorbent which allows the person to sweat enough to keep their head cool on a hot day without constantly dripping.  Fun fact: human hair is so absorbent it’s sometimes even used to help clean up oil spills .

The final function of head hair is probably some UV protection. Back in the days when humans spent a lot of time outside, the tops of our heads would get a lot of direct sunlight. Though a full head of hair won’t protect you from sunburn, it can slow down the effects.

Universalis Guide:

sunscreen

Instagram: sunsense_aus

If you’re going to get anywhere with AU, you’re going to need a beanie and a sunhat. Unless you live in the lovely warm north, in which case I recommend two sunhats. A full wide brim will give the best protection.

Sunscreen is also a must. Australia is the skin cancer world capital and just take my word for it that a sunburnt scalp is not fun. I find the best sunscreens for my head are ones designed for the face or under makeup, as these tend to be a bit lighter and don’t feel gluggy or oily. SPF 50+. You know how this works.

On hot days or when exercising there are a few things you can do to combat the sweat-tacular experience of lacking that wonderfully wicking head of hair. For wig wearers, I highly recommend keeping a packet of tissues on your person at all times. Some wigs can be worn while exercising but if you find it uncomfortable or overly warm, consider opting to for a hat or scarf or going au natural (if you’re inside). Scarves made from cotton or natural fibres like bamboo will breathe the best. I’m also a big supporter of sweatbands for AU gym junkies. It’s a bit 80’s, but it does stop you from dripping all over the yoga mat. You can find them in the tennis section of most sporting stores.

laura-hathaway

Check out the fabulous @laurahathaway_alopeciafit for inspiration!

 

Lashes

What are they for?: Eyebrows primarily function is to aid communication so I’m not going to write much on them. Lashes however are a different story. The help shade your sun from your eyes, they keep sweat out of your eyes, and they help defend against particulates and dust. They also help your eyes stay moist by directing air currents away from your eyeball.

Universalis Guide: If you, like me, happen to have glasses as well as universalis, you are in luck my friend. Universalis can do a real number on the eyes, and the extra protection from a pair of specs can be a huge help. But no need to worry, my 20/20 visioned friends, there are other things that can help to.

book-and-sunglasses

Summer essentials: Sunnies and a book.

Sunglasses are a good idea to reduce damage from glare, while looking snazzy at the same time. Eye drops and eye gels can also help to moisten dry eyes and shift grit or particulates which can cause damage to the surface of the eye. Always best to talk to your optometrist first about what kind of drops might work best for you.

When applying makeup, the lash-less should always take extra care. The particles and dust from powder makeup (like eyeshadow, pressed powder foundation or setting powders) can easily get into the eyes when you don’t have lashes. Even liquid makeup like foundation or eyeliner can get into the eyes without lashes as a barrier, even long after applying if the makeup shifts with sweating. Once again, eye drops can help rinse the eyes of these particulates, but discuss with your optometrist.

 

Nose hair

What’s it for?: Nose hair has got to be ranked Number 1 on list of things you don’t know what you got ‘til it’s gone. Much like eyelashes, its function is pretty much to keep out the things that should be out and keep in the things that should be in. Wait, things should be in my nose?

Yep, the reason we have a nose at all is to warm and moisten air before it gets to our lungs. The moistening part is done by a mucous membranes, and if you don’t have nose hairs to help keep that mucus where it’s meant to be, it’s, well, not so pretty. Your first head cold as member of the universalis family is very memorable. Bring tissues.

Universalis Guide:

All jokes aside, lacking nose hair puts people with universalis at greater risk of sinus infections, allergic rhinitis, colds and other airborn infections, and hay fever. There are some things you can do to help.

hay-fever

Me, every pollen season. Source: Flickr

Sterile saline nasal sprays can be used regularly to help prevent particulates and allergens being inhaled. These are usually un-medicated (sterile saline being clean salt water) and can be used as much times as needed, which is particularly useful during pollen season or when you have a cold.

Medicated nasal sprays can help to alleviate severely runny noses, but use with caution. Many of these have very strict dosage limits, shouldn’t be used with certain other medications and can dry out the nose uncomfortably.

You may also find that your nose also feels very dry and may even bleed during hot months or after spending long periods of time in dry air conditioning. The saline nasal sprays may provide some relief, as will a humidifier. There are also nasal gels which can help, but again, try to find un-medicated ones if you can.

 

Ear hair

What’s it for?: Can you guess what ear hair does? That’s right! It does try to keep particulates and dust out of your ears! You’re good at this.

Universalis guide: Don’t use Q-tips! This goes for anyone, not just our AU family. Don’t stick things in your ears.

Ear wax exists for the same reason as ear hair – it keeps things out of your ear that shouldn’t be there. And it’s usually self-maintaining. Using Q-tips actually pushes wax further into your ear and can do some real damage to your hearing. If you feel like your ears are blocked or stuffy, go see your doctor. They can most likely help with ear drops or by syringing the wax.

Aren’t human bodies just super fun and not at all gross?

 

Arm pit hair:

What’s it for?: Like head hair, the function of having hair in arm pits is still being fairly hotly debated. Like head hair though, most people think the major purpose is to wick sweat and aid in ventilation.

Universalis Guide: I lost the hair on my head over a decade before I started losing it on my body, and let me tell you, the day my armpit hair finally abandoned ship was a celebration. Literally. I bought champagne.

However, as with so many parts of the universalis experience it wasn’t quite as simple as expected. As armpit hair is mainly for sweat wicking, you might find yourself needing more deodorant than usual. Popping a backup into your purse or workbag can be a good idea, and I especially recommend it in summer. Some people find that long acting stick or soft solid antiperspirants can help, but you may also find that the skin in your armpit is more sensitive than usual, especially if you’re also prone to eczema, and these long acting products can dry your skin. Look at buying sensitive or hypoallergenic versions and go for soap free body washes.

 

There you have it, my dear friends. While this isn’t a comprehensive guide by any means, we hope that it will cover some of the basics of flow on effects of AU that may not have come up in your dermatologist visits. If you have any great advice that we’ve missed in this column, or things you’d like to see us write about in the future, let us know in the comments.

Love, Alopecia.

Welcome!

Welcome to Love, Alopecia!

If you’re here, you’re most likely one of the millions of people in the world who make up our alopecian community.

Perhaps someone in your family, maybe your child or partner or sibling, has joined the alopecian tribe.

Maybe you work with someone with alopecia, perhaps as a hairdresser or wigmaker or doctor or psychologist or teacher, and you want to know more about alopecia in order to help them the best you can.

Welcome.

Love, Alopecia is a place for all people who make up the alopecia community. If that sounds like you, you can keep up to date by following us for email updates, or by following AAAF on Facebook.

This is a place for the sharing of stories, information, advice and support. Our writers are all experts on alopecia – we’ve been living with it for years.

Stef has been a Support Ambassador with AAAF for several years. Stef has hosted numerous awareness talks at schools, conferences, and business events and has featured on TV and radio, all aimed at improving awareness of alopecia through education. She has had alopecia since she was six  years old.

Georgia (AKA George) is also Support Ambassador, in addition to her main role as the AAAF Secretary. Her background is in media and business, and has had alopecia for as long as she can remember.

Our other writers are, well, you. We have Guest Writers from within all different areas of the alopecia community. They may be blog writers already or may just have a single story to tell, but all are a vital part of what we do here.

Our philosophy is about approaching alopecia as an experience and as an identity, not as a disorder to be overcome. As well as discussing alopecia-specific experiences and advice, we focus on wider issues of image, identity and lifestyle. We’ll be posting articles, opinions and stories centred around the many ways AA affects our lives and impacts who we are.
This project has been proudly developed and supported by the Australia Alopecia Areata Foundation Inc.

If you’re looking for information about Alopecia Areata, how and why it occurs and how to manage the condition, click here to access the AAAF site. If you’re looking for support for people with Alopecia Areata within Australia, AAAF has state based support groups, Support Ambassadors and a variety of tools and resources you can access from here. For parents seeking resources for a child with alopecia, click here to access the AAAF Parents Support Page, which include links to our School Pack and Parents Brochure.

Please feel welcome to browse the site, chat with us in the comments and follow us to stay up to date. If you’re interest in writing for us, we’d love to hear from you! Please drop us a line at lovealopecia@gmail.com