Living with alopecia

When I was a little girl about 9, most of my hair fell out.  It fell out in small patches rapidly until it was mostly gone.  My parents took me to the doctors and we were told I had aloplecia areata, an autoimmune disease where the immune system attacks the hair follicles causing them to fall out.

We were given steroid cream to apply and the offer of a wig but I was a happy-go-lucky girl and preferred to go without.  Even after some mild bullying when my parents offered to get me a tutor to stay off school, I declined.  I remember thinking, “I don’t want this spoiling my fun”.

To everyone’s relief, my hair grew back by the time I started high school.  Just in time for me to embrace the popular early 90’s hair craze of a spray up fringe and perm (come on, you remember).  I dyed it cherry brown and mahogany, grew a fringe, styled and delighted in my hair as every teenage girl does.

There have been a few re-occurances over the years but usually a small circular patch that grows back after a while.  Nowhere near as drastic as when it first happened….until a few years ago.

I first noticed a patch of hair was falling out after we eventually sold our old marital home and I bought my own house.  We moved in September and in the same month my son started nursery school for the first time.  There was a lot going so I put it down to stress and didn’t worry too much about it.

When it didn’t grow back I went to the doctor for some steroid cream.  To be honest I was very complacent and applied it infrequently, still thinking it would naturally run its course and return as it always had.

The patch started to grow in size and move from the bottom of my hairline upwards and around until the lower section of my hair was completely missing.  By this time I had returned to the doctor and was waiting to see a specialist dermatologist.

It took a further nine months for an appointment with the specialist and unfortunately by the time it arrived I had lost nearly all of my hair.  I shaved the last few sections off in Jessie J style in a bid to regain some control (with my son and my sister cheering me on).

We have tried various steroid treatments but to no avail.  Apparently once all the hair has gone the chances of re-growth are drastically cut.

At first I was very self-conscience.   Every woman will testify how important their hair is to them, it makes us feel feminine and attractive.  However despite this, I could hear that little voice in my head again saying “I don’t want this spoiling my fun”.

So I experimented with wigs and found one that I love and feels like me.  Sometimes I get slight variations like low lights for winter and highlights for summer.  When my eyebrows and eyelashes followed suit and jumped ship last year, I got some great eye pencils and it seems all the girls are drawing their eyebrows on these days anyway.

My next appointment was scheduled for March but frustratingly t’s just been cancelled by the hospital and I’m on a waiting list for another.  The plan is to try a new treatment whereby a potent lotion is painted on my scalp once a week with the goal of causing an allergic reaction for 24 hours to stimulate the hair follicles back into life.  Sounds fun doesn’t it!  However, I’m not going to grumble.

In the grand scheme of things, I still count myself incredibly lucky as my condition isn’t life threatening and I haven’t lost my hair through chemotherapy treatment.  I’m well aware that there are a lot of people out there who would swap places with me in a heartbeat.

At the end of the day it’s just hair.  I am healthy and I am happy and so is my son.  I have learnt to see the positives in the situation, because I think it’s important to always try to do that in life.

I find myself often enjoying the perks of having no hair.  I never have a bad hair day or regret a trip to the hair dressers.  I take half the time to get ready to go out and if my hair gets wet in the rain, it dries like it’s been blow dried in a salon.

Although I have accepted my condition and happily live with it, there is a part of me that worries what is going on in my body to cause this.  Autoimmune diseases can be hereditary and in my case this is true.  My mum developed diabetes and thyroid issues in her 40’s and my younger brother was diagnosed with diabetes in his teens.  However, how much does lifestyle affect the condition?

I recently found an excellent article written by an alopecia sufferer Jodi Weisberg who believes that her hair re-growth after 11 years of total hair loss, is down to following a healthy anti-inflammatory diet.

This article has made me stop and think about what I put into my body.  Although I eat whole foods and plenty of fruit and vegetables, I have had a severe sweet tooth since I was a child.  Refined sugar has featured heavily in my diet.

So I have decided to make 2015 a year for helping my body out, to give it a fighting chance.  To help heal my body from the inside out by following an anti-inflammatory diet and reducing my sugar intake.

I began in January and over the last couple of weeks I have been delighted to discover the faintest hint of some hair re-growth which has given me the encouragement I needed to continue along this path.

Through setting up this blog and becoming an active twitter user, I have been introduced to another alopecia sufferer Mary Corrigan.  Mary has also used diet to combat the condition and has written and published a book along with a website What’s Up With My Hair.

Following Mary’s recommendations in her book, on the 1st March I am embarking on a 6 week sugar detox. The aim is to clean up the gut which is the part of the body responsible for healthy immune function.  This involves taking out ALL forms of sugar including fruit and even potatoes and carrots which contain small amounts of sugar.

It’s not going to be easy especially as it ‘s Easter during this period and all around me the world will be going chocolate mad.  However I’m determined to stick with it and see it as an opportunity to learn more about food, try out some new recipes and ultimately grow my hair back!

And throughout it all, I will keep listening to that little voice in my head….because I won’t let this spoil my fun for one minute!!

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And then the fun began...
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36 Comments

  1. 24th February 2015 / 1:27 pm

    I LOVE your attitude Tori. No matter how much you play it down, it must be tricky. I must say, you look absolutely fabulous 🙂 x

    • 26th February 2015 / 8:33 pm

      Thanks Suzanne, that’s lovely. I guess there are times when it’s tricky but everyone is very kind. I think if you accept it, others follow suit. 🙂 x

  2. 24th February 2015 / 1:53 pm

    oh wow, what a wonderful, honest and positive post. You’ve actually brought a tear to my eye. My little girl is 9yrs old and has alopecia, but telogen effluvium from her surgery last year. Her hair is growing back already. I think I have been more concerned about it than she has been, she takes everything in her stride. I hope you do find something that works for you, but honestly, I think you’re going to be just fine anyway xx

    • 26th February 2015 / 7:24 pm

      Oh wow, I hope your little girl’s hair continues to grow. Children are marvellous at getting on with things. We only become more self conscience we we get older I think. Thanks for your lovely words and I’m so glad you enjoyed the post. xx

  3. 24th February 2015 / 2:33 pm

    Tor, you don’t know how happy I was to see the words sugar detox. As I was reading this post I was thinking about my own autoimmune issues (acne, allergies) and how being on the GAPS diet is basically making them a thing of the past. The main part of GAPS is cutting out refined sugar, but as well as that all processed and starchy carbs including all grains. It’s quite hardcore but having been on it for nine months, I cannot recommend it highly enough. You might enjoy my other blog and the latest post on there is a six month warts and all update http://mummytriesgapswordpress.com

    Very best of luck I really hope you see results, keep us all posted won’t you. Hugs lovely xx #thetruthabout

    • 26th February 2015 / 7:23 pm

      Oh thanks Renee I shall take a look at that! Yes I’m cutting out gluten and baking my own almond and coconut bread and also no processed foods. Thanks so much for the advice, it really helps to know that others have benefited from the same type of diets. It spurs you on. xx

      • 7th March 2015 / 10:41 am

        Hope week one has gone well lovely, looking forward to following your journey xx

        • 9th March 2015 / 4:46 pm

          It’s been soooo tough! Thanks so much for checking in with me. xx

  4. 24th February 2015 / 5:12 pm

    This is an amazing post. You are inspiring. I love those photographs of you. Beautiful! Good luck with the sugar detox. It is definitely something that I couldn’t do. I really hope it goes well. Hugs Mrs H xxxx

    • 26th February 2015 / 7:19 pm

      Thanks hun, that’s so kind. Yes it’s going to take will power but it’s amazing how quickly you lose your sugar cravings when you’re not actually feeding it. Mwah xxx

  5. 24th February 2015 / 5:16 pm

    For what it’s worth, I read this post with my 3-year-old on my lap whining about being bored while I do blogging stuff – and the silly photo gallery you put at the end made her day! Thanks for sharing and I love your attitude – it is, after all, just hair.

    #thetruthabout

    • 26th February 2015 / 7:18 pm

      Hooray, that’s brilliant! Well that’s made my day 🙂 Thanks Jenny xx

  6. 24th February 2015 / 9:39 pm

    Wow Tor you are so brave, and beautiful with or without your wig. Have you tried high frequency treatment as i have seen that work several times on small patches of alopcia but never used it on alopecia totalis. My son suffers with type 1 diabetes and I know exactly what you mean when you say you are lucky, I feel that with Jack. You deal with it in such a positive manner you are an inspiration x

    • 26th February 2015 / 7:17 pm

      Thank you Sarah, your comments are lovely. I haven’t tried high frequency but I have heard about it. I hope to start some more treatment this year at some point but I’m in the hands of my specialist. It must be so tough having a child with diabetes but yes, there are many more serious conditions and so we count our blessings every day. x

  7. 24th February 2015 / 10:02 pm

    Wow this is so interesting Tor and your mention of refined sugar and the idea of changing your diet to heal your body from the inside out really reminds me of the GAPS journey of Reneé from Mummy Tries (I’m sure she’ll be commenting on this herself!). I wish you every success with it although TBH you look absolutely fab in your wigs and I’m just slight envious of never having to go to the hairdresser or bother with styling!! Thanks for linking up to #thetruthabout again hon Xx

    • 26th February 2015 / 7:12 pm

      Haha yes I have really come over to the positives of the situation. My boyfriend also loves that I don’t take as long to get ready any more! My hair was never as good as the wigs so I’m going to enjoy it. Might go blonde next or maybe red…. xx

  8. 25th February 2015 / 12:03 am

    This is an incredible post, the positivity is amazing. Your ‘this will not spoil my fun’ mantra is really quite inspirational. Lots of luck with the diet, do keep us posted on progress xx

    • 26th February 2015 / 7:10 pm

      Thank you Sara. I can’t help it, this girl just wants to have fun! xx

  9. 25th February 2015 / 12:30 pm

    You are truly an inspiration. I love your attitude towards it all as a child and adult. You look amazing with hair and without and I am not just saying that most cannot pull it off. I love that you are healing yourself inside out. I can’t imagine what it’s like but I would hope to think I would have a positive outlook as you do and inspire others to do the same. Welcome to share with me. It’s always great to get to know more blogs and bloggers and I love how you write so beautifully as is your blog too. Thank you so much for linking up to Share With Me #sharewithme

    • 26th February 2015 / 7:09 pm

      Jenny, that’s such a lovely thing to say. I am really enjoying getting to know everyone through all the different linkies and I’m truly bowled over my how welcoming and friendly everyone is. xx

  10. 25th February 2015 / 3:18 pm

    You have a fantastic, positive attitude and look absolutely fantastic with or without a wig. My hair falls out in chunks every few years and I’m sure I notice it much more than anyone else but I don’t deal with it nearly as well as you do. x #sharewithme

    • 26th February 2015 / 7:08 pm

      That’s very kind of you. It’s taken me a while to get to this point but now I have it’s actually very liberating. x

  11. 25th February 2015 / 10:41 pm

    Wow, I love your attitude, so healthy and inspiring considering how much fuss us girls usually make about our hair. I really hope the diet work for you but from reading your post, I get the feeling you’ll be fine either way. Whatever happens continue refusing to let anything spoil your fun! x #thetruthabout

    • 26th February 2015 / 7:05 pm

      Indeed! Life is too precious to worry about a bit of head decoration 😉 xx

  12. 25th February 2015 / 11:23 pm

    Wow what a great post huni. I am so sorry this has happened to you, I know a lot of how we feel about ourselves can be tied up in our hair. You look fabulous with or without hair xxx

  13. 26th February 2015 / 8:16 pm

    What a fabulous post! I have nominated you for the Liebster Award because I love how your sense of humour comes across in your posts. To find out more just look at my latest blog post. X

    • 26th February 2015 / 8:39 pm

      Thanks lovely lady! I’ve just written my own Liebster though as I was nominated a couple of weeks ago. I’ve very flattered though! I shall enjoy reading yours 🙂 xx

  14. 27th February 2015 / 6:54 am

    Hi Victoria, this is a really interesting blogpost, I’ve wondered about alopecia before, I didn’t realise it was an AI condition. I’m really pleased for you that the diet is helping but you look fab regardless. i found your blog through #pocolo 🙂 x

    • 4th March 2015 / 2:09 pm

      Thanks so much for your lovely comment 🙂 x

  15. 27th February 2015 / 8:11 am

    I think it’s fantastic and inspirational that you’ve always tried to make the best of each situation, especially by experimenting with new wig styles, I guess this gives you a chance to be really creative too.

    I wish you the best of luck with the investigation in to cutting out refined sugar. Even if it doesn’t hold the intended results for your hair (which I hope it does), it can certainly make you feel healthier, so it will yield one positive result at the very least.

    • 4th March 2015 / 2:09 pm

      Thank you jez, so far, so good. I’m very optimistic but like you say there are so many other benefits too. x

  16. 1st March 2015 / 4:00 am

    I love your ‘I’m not going to let this ruin my fun’ attitude and I’m thinking what an amazing kid you would have been. Losing your hair combined with ‘mild bullying’ could have left you shy and under confident, instead you have appreciated the resilience it has built in you. Wrapped in a supportive family this amazing kid grew up with hair, into a strong women who was full of life and love.
    Will be cheering you on from afar with your sugar detox.
    Wren x

    • 4th March 2015 / 2:01 pm

      Wren, what a beautiful comment, thank you. I’ve never thought about myself like that, you’ve made my day. xx

  17. 2nd March 2015 / 10:09 pm

    Such an interesting post Tor and great to find out a little more about the woman behind the (very stylish) wig. It makes me feel a little guilty in all fairness. In so far as I rarely ‘bother’ with my hair. I’m lucky to have a natural kink and my days of straightening and frazzling are long gone. I often think I should maybe spend more time styling my hair but hey, we’re all different. Very courageous to embrace it. #sharewithme

    • 4th March 2015 / 1:54 pm

      What a lovely comment Carol, thank you so much. x

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