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Guest Post – Hayes Family

If we are talking about positives that go with alopecia, it’s meeting some of the most amazing people world wide via social media. The Hayes Family are some of those people.  Mum Ashley, Dad Zach and daughter Malia, come from America and make YouTube videos primarily to promote alopecia awareness because their beautiful daughter has alopecia. I have loved watching their videos (partly because they are also Disney super fans and that makes me happy) and admire the way they are so open and honest about how alopecia affects their family from a parents point of view and from a child’s perspective.

So, I reached out to them and asked if they’d like to guest blog about their experiences and they said yes! So here you go, a guest blog post from the amazing Hayes family. Please go follow them on their social media and subscribe to their YouTube channel:

YouTube: @hayesfamilyvlog Instagram: @hayesfamilyvlog

Our Beautiful Alopecia Princess

If we could only choose one word to describe our daughter it would be “incredible”. In November of 2016 our daughter Malia was officially diagnosed with Alopecia Areata. However, she has had it since she was a year and half old. 

It all began very slowly. At the age of 2 her hair had completely fallen out; her eyebrows were completely gone and then her eyelashes fell out. This gave us major concern as to our child’s health so as parents due, we took her to a dermatologist. They told us not to worry and that hair loss at Malia’s young age is normal but that it could be Alopecia. She suggested that we continue to watch her hair growth and that if it continued, to come back for another checkup. 

Within a year of this appointment Malia grew patches of black and white hair that would inevitably fall out. This cycle happened often. We would get stares and even be approached by strangers asking if Malia had cancer or how her chemotherapy was going. When we would tell them that she was not sick the next question was, well what’s wrong with her and sadly we did not have an answer. So right before Malia’s 4th birthday we scheduled a checkup appointment and behold she was diagnosed with Alopecia Areata. 
It’s funny how badly you want an answer to something and when you get it, it’s not what you want to hear. I’d be lying if I told you I was not sad and upset. I was and so was my husband. As her mother the first thing that went through my mind was, what did I do or not do properly while I was pregnant? I put so much blame on myself and cried for a week. We realized that being upset about it doesn’t change anything nor help the situation so we decided to face this head on and learn everything that we possibly could. And you know what? It helped! So we began to look for support groups and basically anyone else who has Alopecia that we could reach out to. 
As a family we watch a lot of YouTube. Fail videos, family vloggers, Disney vloggers, theme park vloggers and basically anything funny. So we decided to see if there was a family on YouTube who had a family member with Alopecia. The search came up with zero results. We found a lot of adults with Alopecia which is lovely but no children for Malia to relate to. So that day we decided that maybe we could help other families and children who have Alopecia by making fun family vlogs! We figured if we could inspire someone with Alopecia to live their life openly and freely then maybe we could make a difference in brining awareness and acceptance. And you know what, IT WORKED! We have been introduced to so many wonderful people with and without Alopecia who are not only kind but are wanting to help spread the awareness. 


In the end, as Malia’s parents we try our absolute best every single day to build the confidence she possesses. She is the most beautiful person inside and out, we could not be prouder.

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Alopecia Awareness Month is here again

September is here again which means it’s alopecia awareness month!

This year feels very different to last. I did a lot to raise awareness last year: fun hat Friday events both here and in Dubai, I spoke at my old secondary school and posted every day on social media…but this year, for one reason or another I haven’t prepared or sorted anything.

Last year I found it almost easy to raise awareness, I didn’t mind sharing my story or taking bald selfies but this year I feel differently. Now, don’t get me wrong, I will always want to raise awareness for alopecia but my own self confidence has plummeted over recent weeks resulting in me feeling less comfortable in my bald skin than I have before.

Even the slightest glimpse of myself that I might catch in the mirror or reflection in a window makes me well up. I’m avoiding mirrors again and feel very un-accepting and feel resentful of everything my mind and body is. As always my smile masks a million thoughts, feelings and daily battles – to do with alopecia and much more and it does make me sad that I feel this way about myself because once you lose that sense of self-worth it makes everything else very difficult. However, I hadn’t really thought much about it until I was going through one of my ‘unhelpful thought pattern’ diaries with my CBT therapist where I broached this topic. They are normal, daily thoughts I have about myself but I was brave and decided to share that with her and her response was shocking to me. She got quite teary at the language I used to describe myself and crossed out some of my ‘evidence’ to support my thoughts! This is what brought everything crashing down to Earth for me, seeing someone else’s response to my ingrained self worth.

Now I’m not writing this blog for sympathy or to get nice comments – far from it. I almost didn’t post it because it because it’s so personal but I do feel that it’s an important blog to put out there because alopecia and ME/CFS doesn’t follow a linear pattern (I’m desperately avoiding the word ‘journey’ or ‘roller coaster’ here!). People say time is a healer and generally I do believe this but at the moment, a year down the line, in this circumstance it’s not true.

I am obviously writing this from my experience but my feeling about alopecia robbing me of my femininity is stronger than ever. I have always been my own worst critic but I always said my best features were my hair and eyes – and alopecia has taken that from me, to the point that if asked, I genuinely wouldn’t be able to tell you one physical part of me that I like. I wasn’t going to write about this but hey, I’ve been open in most other aspects of my life so here goes!

Weight has always been an issue for me, I am your stereotypical yoyoer. I first joined Weight Watchers when I was 16 so in reality my weight issues have been going on for over half of my life. Just before I became ill though I had had strong words with myself, took advantage of the pool on my roof, invested in a cross trainer and signed up to The Body Coach scheme. I lost just over a stone and was feeling great, I had a grip on myself and for the first time in years, felt great. But as it seems to go with me, this is when ME took a hold as did the various concoctions of drugs, many of them having the side effect of weight gain which to be perfectly honest was/is a right shitter because if you’re asleep or immobile most of the time and minimal exercise causes excruciating pain, the only result is going to be the enormous growth of Hannah Green! I know it’s happened, I can feel it, and when I dare to, I can see it. So the combination of this plus being bald, still not being able to wear make up or hats or wigs – you can see maybe why I feel so yuck – and that’s putting it lightly.

There are so many people who I’ve connected with who have ME that are experiencing the same as me in terms of drugs and weight gain and feel the cruelty as deeply as I do. It’s just an added thing to make you feel rubbish but also, as we know, weight gain will impact your joints and muscles meaning increased pain and decreased progress, it’s such a vicious cycle. I feel less and less inclined to go out, see people, do anything. I’m not giving into this by any means but I am definitely having more days where I could easily stay in bed – partly because I’m low and mainly because I am just flat-out exhausted. However, this is going to be the next area to tackle in CBT so hopefully I’ll see changes or learn coping mechanisms soon.

Haha I’ve just had a little read back – what a cheery blog this is! Seriously, I do manage to yank myself out of bed every day, put the smile on (most of the time) and get on with it because there isn’t really any other option in my eyes.

So, bringing this full circle, this year I feel less confident in my alopecia skin, I would feel a fraud using hashtags like #baldisbeautiful because for me, right now, it’s not true. Of course I will still be doing little bits and bobs to raise awareness however, in a few months I will be able to share something very exciting with you that I’ve been working on and that will be my contribution to this years alopecia awareness.

So, my little reminder to myself and to other people is to remember that everyone is fighting a battle that may not be visible so don’t pass judgement. Just be kind.

Happy alopecia awareness month.

#hairlesshannah

A day in the life of an alopecian

 

My morning routine is so much simpler – no washing, drying, styling my hair, just a little buzz with the razor to ensure the bits that still grow keep in time with the bits that don’t. I’ve got used to shaving my head now but I still dislike doing it. Every day I hope to see that the hair on the top has started growing so I don’t have to shave the rest…one day it’ll happen, everything in it’s own time I remind myself.

I make myself look in the mirror, just for a few seconds to remind myself that this is who I am and that’s okay. It’s funny, I think people around me are more accepting of my baldness than I am. That’s how they see me now and that’s how they love me, I just wish I could do the same for myself.

I’m going through a phase at the moment where I am desperately missing my eyelashes. Partly because the pollen count has been high and my eyes, with no barriers, have suffered a lot this year. But mainly because I miss putting on mascara! I loved wearing mascara – as well as eyebrows framing our faces, there’s something about long lashes that make eyes prettier. I think one day I will have to spend some proper time trying to conquer falsies but for now, the naked is eye is what it is!

Today I am venturing out, some days I constantly think people are staring, some days I couldn’t care less but mostly I feel a constant shadow of self-consciousness. I am very aware that I am more than likely the only bald woman in the vicinity and I stick out like a sore thumb. Some people offer sympathetic smiles, some avoid eye contact and others can’t help but stare gormlessly. It’s been a while since comments have been passed but today I’ve had two encounters.

  1. In the doctor’s surgery the receptionist assumes I have cancer and asks how my treatment is going. Now, normally in this situation I’m happy to explain I don’t have cancer, I have alopecia but today, in this situation, in this environment, I feel guilty and uncomfortable and I simply reply with, “it’s fine thanks.” WHY?! I then feel even worse because I’ve basically let that woman think I am having treatment and the people in the line behind me now think the same and I’m faced with four other sympathetic smiles and oh dear god, please let the ground open up. Sometimes I just don’t have the strength to explain. I know that’s no excuse but that’s how it is. I want the moment to pass as quickly as possible with as few words as possible.
  2. I hear a shout…”hahahaha that lady hasn’t got any hair!!” A nine-year old girl sitting in a restaurant with her family decides she can vocalise her amusement at my appearance. Again, normally with children I let if go over my head because, they are children. But today it hits me like a ten ton truck. I stop and stare at her with my best teacher stare which makes her look down and cower in her seat. Her mum looks and me and looks away instantly – with embarrassment? – and her dad pulls her down in her chair and mutters something out of my ear shot. I stood there for several seconds and then walked on, tears in my eyes as though someone has just punched me in the gut. As I walk away I regret instantly that I didn’t approach that child and her family to educate them. Ask the parents to explain to their children, who are old enough to know better, why some people a) don’t have hair, b) look different and c) why we shouldn’t publicly humiliate those people because of their differences. And tell that girl, her words have hurt me, a stranger who she won’t think about ever again but that I will continue to think about her for days to come because her words and laughter struck a chord deep down that hurts like hell. That she needs to think before she speaks and be kinder to people.

Like I say, thankfully these interactions don’t happen very often – thank goodness. It still stuns me how hair can have such an impact on me, my self esteem, confidence…everything. I am not okay with being bald, I am not okay with it at all. Every single day I long for my hair and it scares me to allow the thought that it may never come back. I am good at dusting myself down and moving on because there is so much else going on in the world, my hair is not a biggy.

I walked past LUSH as well today – they had a new product in the window, a cubed product on a lolly stick…of course I went to take a closer look. Hair oil on a stick – wow! I loved a good hair oil treatment but wait, I don’t have hair so I can’t use that. Damn. Luckily I can use a bath bomb – every cloud eh?! There was an article on FaceBook today about a guy who had a hair piece attached and he was SO excited to have hair again after being bald. He spent £90 in the supermarket on products and he couldn’t have cared less! He was saying loudly down the ailes, “look I’m buying shampoo, SHAMPOO, for my new HAIR!” What a legend – it made me smile from ear to ear.

These are the things that catch me unaware and it’s funny because conversations that people apologise for like complaining about a bad hair day or grey hairs etc, they don’t touch me. They don’t bother me at all. Maybe it’s because these conversations happen with friends and they are natural, normal conversations for girls to have together and I’m just happy to be involved in them. I find that I can make jokes about my baldness in these stations…I don’t have the issue of grey hairs etc!  What I do miss is the getting ready to go somewhere and brushing my hair or playing with a strand whilst watching TV…like I say, the little things.

Today the weather is cooler and I miss being able to wear a hat or having my hair clipped back but I have to admit, over the last month I experienced for the first time a sense of not missing my hair. Albeit fleetingly, but in the heat we’ve had and with no air con, the thought of drying and styling my hair – no thanks! But as Dad said, I think I’d quickly get over that if I meant I had my hair back!

As I get ready for bed and moisturise my face I think of silly memes that go around about how far up do bald people moisturise because, where does your forehead end?! Bloody stupid meme if you ask me! I run my hand over my head sometimes, almost as if I am apologising to it for hating it so much and reminding myself that my bald head is a part of me that I care about and maybe, just maybe if I try to accept it and love it more, it will reward me with some regrowth. Maybe. Hopefully.

And then I get into bed, thankful that the stress and dread of hair on the pillow in the mornings is gone but still after all this time, finding the feel of a pillow on my head is still strange and prickly. As I turn over onto my side I will occasionally flick my head like I used to, to ensure my hair is out of my face….phantom hair – who knew that was even a thing?! And then I dream, and coming to think of it now as I write this, I have never been bald in my dreams. I always have hair…a dream is a wish your heart makes.

Happy Sunday all,

#hairlesshannah

 

 

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Quiz Night round up!

Hello all! So today’s little blog is just to say a huge thank you to everyone who came to and supported our quiz night last week. We were raising money for Alopecia UK and for our neighbour Paul who is raising money for a new motorised wheelchair and further treatment for his brain tumour.

We raised an incredible £1138.30 which is way beyond what I expected from the night. Both recipients will be over the moon with the donations, I’ve given Paul his half already and he was thrilled and wanted to thank everyone for their generosity.

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The support given from my local community was also amazing, the raffle prizes donated definitely helped with the sale of raffle tickets – the palava of running out of tickets was a nightmare though – whoever heard of pulling out coloured post it notes for a raffle?! Cathy you were a total star for dashing off to Tesco and being creative in solving the problem – thank you.  I wanted to give the local businesses a shout out because more often than not these days, local communities get a lot of stick for not supporting people but they went above and beyond and I feel very lucky to live where I do.

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I really hope everyone had a good night, I will never forget coming round from a little nap in the side room to mum rapping lyrics from a 5ive song – it shouldn’t have surprised me really!! Deborah and Jen were total superstars for being in cool, calm control of keeping track of scoring and many other jobs – thank you lovely ladies. And then there’s mum and dad – I couldn’t have done it without you, I know I couldn’t do as much as I wanted to in order to help, so as always, you were superb.

Here’s to continuing with raising awareness for Alopecia UK and supporting friends when they need it most. Have a fab week.

#hairlesshannah

History of #HairlessHannah’s hairstyles

Hair, or lack of it is one of the reasons I started blogging in the first place. Since losing my hair, it’s made me obsessed with looking at people’s hairstyles and I find myself longing to be able to brush my own hair, wash it, dry it, straighten in, curl it…all the things that when I had it, I found a drag! Hair was always the feature that I loved most about myself so I find it so hard that I no longer have that, there really isn’t much I like let alone love about myself now.

Over the years I have had so many different styles so I thought I’d take some time to look back at the good, bad and ugly decisions I’ve made and share them with you!

1988-age-2

So here I am, age two, blissfully unaware of the child abuse my parents have inflicted upon me!! As Jack said the other day, it is like they picked up the bowl from the table, plonked it on my head, cut round it, placed it back on the table and poured my cornflakes in! I have to say though, when watching back video footage of me dancing to Kylie, this hairstyle does have the most amazing swish about it that no other hairstyle could produce – every cloud!

As you can see here, over the following year, I just grew the hair out into a mohawk/the most incredible bowl hair cut you ever did see – simply horrendous!

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

Ah, age 4 and the hair is slightly better, grown out in a softer style with a much improved fringe. However….let’s talk about the outfit choice. Wow. I mean, I am obviously suitably happy with my clothes, the pose oozes confidence and just look at the stance and the hand! Yes, I do believe I styled that out beautifully even if it does look like Maria from The Sound of Music has pulled down more curtains to create this atrosity!

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

Two years later and I have to say, the hair is looking good! I loved having long hair, mum enjoyed crimping it and I remember loving laying at the end of mum and dads bed with my hair hanging over the edge and Dad brushing it with my much-loved orange brush, pretending to be Vidal Sassoon! I often just wore it down but I did like having pony tails and occasionally rocked some bunches. It was the 90’s!

Not being one to keep a style for long, by my seventh birthday I went for the chop! From long locks to my first ever, grown up, silky bob! From then on, the trusty bob often became my go to hair cut, it’s always suited my face shape – so I’m told – and I always found it quick to wash, dry and style. I loved this cut and was thrilled at my choice!

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

Oh good lord. What. Was. I. Thinking?? Why did my parents let me do this? Why did my hairdresser let me do this? Oh the shame! From my gorgeous bob to this. At this stage of my life, let’s just say I wasn’t yet ‘developed’ and I will never forget the day the balloon man at Stone Park Farm said to me, “Yes young man, what would you like?” I died on the spot and from that moment on I regretted this hair style.

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

Then I stumbled across this little beauty! Mum used to take Jack and I to have professional photos each year when we were younger – what you can’t quite see if the very fetching waistcoat I was wearing over a white shirt, I was so classy! The hairstyle is gradually starting to grow out and yes, it is in great condition but I look at this photo and see a nine-year old styled as a forty-year old woman!!

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

Luckily, and ironically, my hair always grew super fast so by the time I was almost ten, the hair had grown out and the trusty bob was back – hallelujah! (seriously, I was such a poser though wasn’t I!)

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

I can’t believe I am actually putting this photo out there for all to see! There is literally nothing positive about this photo! The hair has grown again but is just hanging there with the most hideous, neon, looped headband ever to grace this Earth. Then we move down to the braces – I was so uncomfortable with those on and remember really not wanting to go to have these photos done but I’m glad in many ways because otherwise there would be no documentation of this stage of my life. I won’t even comment on the top apart from saying , 5, a fan before they even became a band!

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

I was such an awkward teen! I felt awkward in my body and awkward in my style but this night I was going to a party and clearly figured that shoving a fake white flower (all the rage in 2002) in my hair was going to make everything better. It didn’t.

Now, finally, these are photos I can look at and think, yes, I got it right here! I had lost a shed load of weight, had my highlights done and went from a long bob to a graduated bob which has to be my all time favourite. I had also discovered straighteners here which changed my life!

2008 saw two very different styles (as you can tell, I really am one to experiment with my hair which is why I miss it so much!) I went from very light blonde to a gorgeous chocolate colour. However, that didn’t last long, I had got quite fond of my blonde hair and I missed the graduated bob too so, I changed it back again! I was lucky here because I had vouchers for a make over day so I had the colour and cut included in the day and they did a really good job. That is something I really miss and something I took for granted at the time – actually having my hair done and having control over it and being able to make choices. I loved being able to reinvent my image and I loved having my head massaged and being pampered.

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

A year later I let the bob grow out but had a wispy fringe cut in – thicker, fuller fringes were okay for me when I was younger but they aren’t for me now. This style of fringe didn’t bother me too much and on days that I didn’t want it, I was able to simply clip it back – perfect.

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

Here we go again – you can see the pattern here can’t you?! Blonde to brown, short to long, fringe to no fringe – I really did like changing things up on a regular basis! I do enjoy having darker hair, I’ve never been brave enough to go black. It is much cheaper to maintain as you don’t get the whole root problem but I have to say, having lighter hair is my favourite. At one point I did go short and red at uni, sadly there isn’t any photographic evidence of this, or that I could find at least and I have to say, I’m quite glad about that!

It seems like the art of crimping came back into my life in 2011. Only for fancy dress purposes of course but actually, I quite liked it! My hair here was long enough to put up in a pony-tail which I quite enjoyed but also, I purchased the doughnut rings and experimented with using them. I may like to change my hairstyles and colours frequently but don’t let this fool you, I was never very good at the actual styling. I mostly went for a side clip, the occasional poofy back clipped fringe thingy-ma-bob and when I was feeling especially creative, would pop in a bow, I know, get me! So using the doughnut was a challenge. I did achieve the required look a few times but the time it took to get there wasn’t worth the end result! At one point I  did spend some time learning how to curl my hair using straighteners which I grew quite fond of. It was nice to have a bit of volume and I enjoyed mixing it up.

Then we come almost up to date. When I moved to Dubai it became clear quite quickly that hair was going to be an issue! The weather meant that keeping any style for a prolonged period of time without using a ridiculous amount of products was quite unobtainable due to the heat! But also, finding a decent hairdresser was like finding a needle in a haystack. Amongst our group of friends we had several disasters and tears shed over the most hideous cuts known to man. Frustratingly, once I did find a good one who did my highlights and styled it beautifully, one month later it all fell out! Blinking typical! I loved living just down the corridor from my friends though, especially friends who knew how to do pretty things with your hair! I became quite accustomed to a french plait!

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

This is the last photo I took before my hair started to fall out again. As you can see, I really didn’t do much with my hair in Dubai and the trusty hit clips could be found most days keeping my hair out of my hot face! Also – please note that we are very happy in this picture because we are at the most amazing cinema with blankets and reclining seats! One of the things I miss most about Dubai!

Polaroid Picture Frame: https://www.tuxpi.com/photo-effects/photo-paper

So there you have it, the history of my hair! I have only included this one photo of the last year or so – I am currently styling out my Lidocaine patches like a badger – much easier than doughnut rings and curling tongs! But if you’re new to the blog, check out my post called, ‘Hair today, gone tomorrow’ under the category titled ‘Alopecia’ to fill in the blanks.

At the moment I do still have the hope that one day my hair will grow again, whether that be next week, month, year or decade. One day I will learn to properly style my hair and not worry about spending money to treat it like it deserves. Look after your hair guys and gals, because like many things, you don’t realise how much it plays a part in your life until it’s gone.

Have a fab weekend,

#hairlesshannah

 

 

Spot the difference

It is a year today since dad shaved my head. So I thought I’d play a game of spot the difference! On the left is a photo taken just after the big shave which I didn’t post on social media but sent to a few friends. The picture on the right, I took yesterday morning. There are four main differences that I can spot – see what you think before reading on!

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1 – My eyebrows! One set are real, one set are tattoos. Both equally as good!

2 – The pictures on the wall are different. Life affirming quotes replace pictures of friendships that have faded over the last 365 days.

3 – The suitcase that held the hopes of going back to Dubai has been put away and in its place is Grandma’s chair. This little area is now where I sit to write my blogs and ideas for books. My little, quiet safe place.

4 – My face! I look at the picture on the left and remember how painfully hard it was to take this photo. After that I didn’t look at myself or take photos for a good few months. It was a relief to rid the pain staking possibility of hair loss each morning but it was one of the hardest decisions I ever had or possibility will ever have to make. Yet now there is a little smile. There is a little more confidence. There is a little more acceptance. Being bald is a far cry from what I hoped I would look like a year on but it is my reality.

The picture I did post on social media a year ago was this:

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I tried to deal with what was happening with humour. Humour has been massively important to me this year. At times I use it as a defence mechanism but most of the time it’s a coping mechanism because if I don’t laugh, I’ll cry and although I’ve cried a lot, I think on balance I’ve probably laughed more. I did make it through the day and I have made it through the year and it has taught me more about life, friendships, resilience and family than I could ever have imagined. I wouldn’t say I’m a better person because of this experience but I would say I’m a more rounded person. I have more empathy for people, I know that I can face adversity and remain positive for the majority of the time and above anything else I’ve learnt that society can be cruel and unkind but that on the whole, people are kind and open to learning about things they may have no previous understanding of.

I’ll always continue to raise alopecia awareness whether my hair returns or not because I will always consider myself an alopecian. I have drawn strength from others with the condition so I would like to think by continuing to spread awareness, someone else will be able to gain strength and have hope. Who knows what next year’s spot the difference will look like? Life is unpredictable but we only get one chance at it. So, my mantra as always, is to try to find the sunshine in every day.

#hairlesshannah