ALOPECIA UNIVERSALIS AKA LOSS OF ALL BODY HAIR

HEALTH, LOVE & MARRIAGE

This one is courtesy of Candy Cohen, who went from feeling ‘run down’ to losing clumps of hair, then eventually being diagnosed with ‘Alopecia Universalis’, meaning she has no body hair what so ever….

  • In September 2012 I woke up one morning with the most awful nausea and felt completely run down.

  • I wasn’t worried about it as I just thought I had a tummy bug on the way.

  • I woke the next morning and felt even worse, however, there had been no signs of any stomach bug so decided to take a pregnancy test 

  • Was I pregnant!!!?

  • No….. it was negative 

  • So what was wrong with me!!?

  • I decided to head to the doctors to see what they had to say. They had no idea and sent me straight to the hospital to have a load of bloods done. 

  • The results were pretty horrendous and not what I was expecting AT ALL. 

  • I was told that my liver was completely inflamed, my bilirubin levels were through the roof and I was really ill. 

  • Jaundice had started to set in and within a few hours, I was starting to look like Marge from the Simpsons. 

  • The next couple of months were life-changing. 

  • I was so poorly that I was bedridden, I lost a stone in weight, I had no energy at all. 

  • I would sleep all day and be up all night scratching my skin to pieces from my raised Bilirubin levels. 

  • About 3 weeks after being diagnosed with an inflammed liver and jaundice my hairloss started. 

  • I remember washing my hair in the shower and seeing clumps of hair just coming out. 

  • Clumps and clumps on the shower floor 

  • In my hands

  • In my hairbrush 

  • I can’t even explain the shock and the devastation 

  • It started falling out around the sides and initially, I was still able to hide it with my hair on top. 

  • I remember my doctor saying to me…. ‘Candy you have Alopecia Areata and being completely honest with you, there is a 50/50 chance that it may grow back or else more could potentially fall out. 

  • I remember frantically ordering everything I could get my hands on for hair loss from Amazon, however, because I had a liver condition I wasn’t able to take anything in tablet form until my liver had healed. 

  • I tried every shampoo that prompted hair growth, I tried different cortisone creams from the doctors but nothing helped.

  • Once my bilirubin levels started to drop and I no longer looked like Marge Simpson my dermatologist put me on a high dose of steroids for 6 weeks, as well as cortisone injections into my scalp. 

  • Wow…..

  • My hair started to grow back 

  • I was over the moon 

  • Little did I know that once I stopped the steroids it would all fall out again 

  • Yep that’s exactly what happened and my god that was heartbreaking 

  • Losing your hair once is bad enough, but for it to then grow back and completely fall out for the second time is like no feeling I can ever explain. 

  • It was like my world was just crashing down around me and it was completely out of my control !!!!! 

  • It was in January 2013 when my mum decided to shave my hair off and I went to buy my first wig in London. 

  • I was soooo excited

  • I couldn’t wait to choose my first wig 

  • I wasn’t scared

  • It was great fun trying on lots of different colours and styles 

  • I decided to go for a long blonde real hair wig and couldn’t wait to get home and show my mum 

  • My mum being a hairdresser was also so excited about seeing my wig and after she gave it a bit of a trim here and there I felt pretty good wearing my long flowing locks. 

  • At this point, I still had my eyebrows and eyelashes and kept saying to my husband that if they were to go I think I would find that harder than losing my actual hair. 

  • About 4 months later…. it happened…. 

  • I lost my brows and my eyelashes and I’ve never felt so unattractive and vulnerable in all my life. 

  • Losing your hair is hard enough, but when you lose your eyelashes and brows you lose your identity.

  • You lose your natural beauty

  • You just feel so ugly 

  • I hated the person staring back at me in the mirror 

  • Who was she…. ? I kept thinking, why me and what have I done to deserve this!?

  • The first 6 months were extremely tough, but at the same time, I tried so hard to just get on with it and be strong for everyone else around me.

  • I still struggle some days with being self-conscious and not feeling confident, but wearing good hair definitely helps. 

  • My husband(who was my boyfriend at the time) was just the most incredible support.

  • We met the December before I lost my hair so hadn’t even been together for a year before I got really poorly. 

  • I kept thinking that he was going to break up with me as he couldn’t possibly find me attractive anymore.

  • BUT

  • He treated me like a princess and loved me for me and that made me the happiest girl in the world. 

  • We had our first child in August 2014, a little girl called Indie-Rose and I remember thinking oh my god, what if I go into labour in the middle of the night and look horrendous with no makeup or wig on, what will I do. 

  • I know it sounds completely ridiculous, but these are the things you think of when you have Alopecia Universalis. 

  • Due to a few complications, I ended up having a Caesarian and so was able to wear my wig and eyelashes and of course a bit of lippie……as you do!!! 

  • It was in October 2016 that Russell and I got married and my biggest worry about my wedding day was ….

  • MY HAIR 

  • How could I possibly get married in a wig?  

  • What kind of wig should I wear? 

  • What if it goes wrong on the day, should I have a replacement wig just in case? 

  • I knew that if my wig looked beautiful on my wedding day the rest would fall into place. 

  • I decided to wear my long blonde wig that I loved and ended up having it curled and wearing it half up and half down. 

  • I felt like a princess

  • My hair was perfect 

  • Everything about my day was perfect 

  • I was determined to not let my Alopecia affect anything about my wedding day.

  • At this point, I had been wearing wigs for about 3 years and to be quite honest with you it wasn’t too bad. 

  • I embraced my Alopecia 

  • I kept telling myself that it was only hair and that I was happily married with a healthy little girl and gorgeous friends and family around me 

  • I felt so incredibly blessed

  • Yes it’s hard losing your hair, but hair doesn’t define us and it shouldn’t destroy our happiness! 

  • We are on this earth once and we need to make the most of each day and not dwell on things that are completely out of our control. 

  • It was in August 2017 when I had our second child Sienna and literally felt like the luckiest girl in the world having 2 beautiful girls 

  • I couldn’t believe it 

  • My girls have been such a huge support

  • They love me for me, they see me as mum whether I am bald or have a wig on and their favourite thing is trying on all my amazing wigs 

  • I think it’s so important to teach my girls that 

  • IT’S NOT ABOUT BEING BEAUTIFUL

  • Let’s rather teach them to be bold, be silly, be strong, be confident, be independent, be brave and be fierce….

  • LET’S REDEFINE BEAUTY 

  • My girls love me for me and I hope that one day they grow up understanding that true beauty comes from within and to accept and love everyone for who they are and not what they look like.

  • In January 2020 I was asked to be a wig ambassador for a big wig company called Trendco (I went to them for years and years to buy wigs) 

  • This was a very special day for me, I was over the moon that I was asked to represent something so close to my heart 

  • That was when I decided to start my Alopecia page and named it @alopecia.candyco84 

  • I’ve been documenting my journey for 6 months now and it’s been an incredible journey. 

  • I get such special messages from lots of different people telling me how I’ve helped them on their hair loss journey and that to me means the world. 

  • If I can just help one person then I am a happy girl

  • I’ve been honoured to represent lots of companies by reviewing their wigs 

  • I’ve met so many amazing young ladies in the hairloss community that are so inspiring and such a huge support 

  • My confidence has really grown and at last I am starting to accept that bald girl that starts back at me in the mirror every day. 

  • She’s doing a lot of growing and experiencing a lot of self acceptance. 

  • The cherry on the cake for me has been setting up my own hair accessory and jewellery business.

  • I have a slight obsession with Alicebands , Headbands and Jewellery for both women and young girls and so decided to set up my own little online shop called candycoboutique 

  • It’s been open for 6 weeks now and oh my goodness its been fantastic.

  • Lots of hard work, but worth every minute 

  • When I look back I do feel proud of how far I’ve come and how I’ve turned a negative into a positive. 

  • We all go through difficult times, but it’s how we deal with them

  • Please remember that if your experiencing any form of hair loss to speak to a family member, doctor or friend. 

  • Your not alone 

  • There are so many different forms of treatment out there now to try and encourage hair growth and a lot of them do work 

  • If none of its working for you just remember that this is your journey and you take all the time you need to try and get to that positive, happy place. 

  • Finding a good wig is a game changer and will definitely boost your confidence. 

  • Don’t ever feel alone as there is a huge community of women with hair loss on Instagram and will support you every step of the way. 

  • Some see Alopecia as a weakness.

  • I see it as an opportunity to get stronger.

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