My Story So far….

I have suffered with alopecia now for nearly 3 years. I know some people who have had it for 2 months and others, 20 years…. So why do we still not know how to effectively treat it? Or better still, what actually causes it!

I am a curve model, photographer and business woman. I have 3 children – 2 adults and one 12 year old. I have a busy life, one with so many variables, influences, issues and strains that I didn’t notice the impact this all had on me until one day at age 39, it all caught up with me and my hair started to fall out.

What first started as hair coming away whenever I brushed it, quickly turned into small patches of hair missing; patches about the size of a 5p coin. I was instantly concerned but not overly worried at this point, a few months back I had a nerve block injection in the back of my head for migraine pain relief and I just assumed it was a reaction to that. How wrong I was.

Over the weeks more and more hair seemed to vanish in my sleep. Fortunately (if you can use that word), the hair that was falling out at this stage, was just at the back underneath and the top layer of my long hair was thick enough to hide it well. Yet I still didn’t really think about it that much – I am a busy woman with businesses to run, a home and children, so time to think about my hair was the last on my list.

Things got worse, fast. 5 months after my hair initially started to fall out I was left with literally no hair on the whole back right side of my head, my once thick hair now thin and sparse.

Now I was worried, very worried. It started to affect me, started to affect the things I did, the person I was, I didn’t even recognise the person I was becoming – I was always playing with my hair – pushing it around my shoulders so it hid the missing baldness. It made me feel so conscious and attacked my self-esteem. I started to suffer with social anxiety, worried what people thought of me, making excuses to avoid social situations. I started to fall into a deep depression and loneliness, this hair loss was no longer just a cosmetic issue.

I would look in the mirror on my own at home and just cry, sometimes I would cry for hours. I always tried to stay strong in front of others and hide my feelings, very occasionally my husband would see me cry or I would break down in front of him, I hated showing others the pain it gave me, I didn’t want to appear vain, or have others talk behind my back. Every day I could hear people’s words, words of people I knew, words of people I didn’t, these words were only in my subconscious but what if they were real? “She’s got everything else I don’t know why she’s so upset”

“She has nothing to be worried about it’s just hair, she could be seriously ill”.

In ways, some of these words were right, I could have been ‘seriously ill’ but how foolish I was to not realise that I was seriously ill. The way I felt, the pain I suffered daily, the anxiety, the constant voices in my head, the depression and of course not forgetting the hair loss itself. The way it plays on your mind is most strange. I even became embarrassed about being conscious of it – like I shouldn’t deserve to be.

These feeling pushed me to go back to my doctors, I was becoming more depressed and honestly an emotional mess.

My doctor who previously expressed little concern with my hair loss, now stated paying attention and referred me to a dermatologist suggesting I had Alopecia.

I was happy to be finally getting some headway towards answers as to why I had hair missing, what it was, why it was happening, what had a caused it! But now I was worried, in this moment, I remembered a close friend of mine from when I was just 16. She lost all of her hair to Alopecia – her whole body and it never grew back. Would that happen to me?

So, in my usual fashion – I spent hours researching it and started talking to others about it. Fascinatingly I discovered many, many people have suffered or were suffering with some form of patchy hair loss but nobody felt comfortable to openly talk about, everyone is too concerned on other’s opinions and very, very conscious of it. Sadly, we live in a world where we are constantly judged by what we eat, how much we weigh, what colour our hair is, how white our teeth are, even by the clothes we wear. So really there is no surprise.

I had to wait for what seemed like months before I saw the dermatologist. It was a long enough wait of 10 weeks but it felt so much longer when I just wanted answers. I was worried I’d never have hair again!

The dermatologist was a funny man, made me laugh. Initially he went through my history and he wanted to discuss when the hair first started falling out, what I was doing both then and 3 months prior, my feelings, any issues, any STRESS. I remember laughing and saying, yes I’ve been stressed, I have 2 businesses to run which pull me in opposite directions and both require 100% of my time, I have a busy home with 2 adult children and 1 ten year old (at the time). In May I had thrown a wedding party which had caused me some stresses during the planning – more so in that I felt people were talking behind my back and calling me bridezilla!  We were then asked to move out of our lovely little home that we were renting as the owner wanted to sell, this meant we had to lose our very beloved dog as our new home didn’t allow pets. Finally, and the most sad, my husband’s nan was killed in a car crash a week before our wedding party. As you can imagine, none of these things, really put us in the mood to celebrate.

Well that’s it, he said. I have no doubt that this hair loss has been brought on by stress. He looked closely at my bald patches and put my mind at rest that the follicles were there – but sleeping.

I didn’t realise at the time that I had been under so many emotional journeys all at once, talking about them made me realise – my stress and anxieties brought upon me were being developed into an internal destruction of my hair! Stress had induced alopecia and wasn’t going away until I was no longer under stress. It had kick started my immune system in kill mode…. kill off my hair follicles.

The dermatologist injected steroids directly into my bald patches to stimulate the hair growth and gave me a course of steroid tablets for 4 weeks –  after this I had to go back and see him for a check up. I left feeling miserable and very sore.

I started taking the steroids and within a few weeks I noticed patches of hair growth in the area of the injections. It worked! I was thrilled, my hair was coming back in the big ugly bald patch I had.

However, after some months, although the steroid injections did indeed make the hair grow back it was only in very small areas. I was also left with huge craters were the collagen had collapsed so I was now a patchy and indented head monster! I literally sat crying for days. I sunk into further depression and began to accept I’d never look the way I did again. It was at that moment I decided I’d have to start looking for a wig. I could see the top was now starting to disappear in patches and if that did what the bottom part did then I’d be bald fairly quickly. I looked up and down for good wigs, one that would replicate what I had before. I found a few companies that seemed great but they were so expensive. I could never afford them. This made me even more unhappy. I couldn’t buy a cheap synthetic wig as they look shiny in photos – I am a model and at the time had a contract with a TV company for weekly fashion shoots. I didn’t know what to do.

My family could see the distress I was in, so my daughter took things into her own hands and decided to set up a just giving page for my new wig. She shared it amongst her friends and family and slowly people kindly donated money for my new wig. I was overjoyed at the generosity of some people. I say some as not everyone was happy to see a just giving page for hair. I was branded vain, told I wasn’t ill and therefore shouldn’t be using the Just Giving page for such a cosmetic item, etc etc. They didn’t understand how I felt and that broke my heart.

When the money came in, we had enough for 50% of the cost, my hubby told me he would put the other 50% in for me. He worked extra hours and weekends to make up that money but he did it and I bought my first wig from a lovely lady called Vanessa at Glamourous Butterfly. She was so helpful and lovely and made my wig buying experience an easy one.

The day the wig came I felt so happy, I could wear hair and look the same as I did before. Now I could concentrate on getting better because I had hair to wear – hair to make me look like me again – I was able to model and go out without feeling like a weirdo hairless beast.

From buying and wearing one wig I then went on to get exclusive contracts with other wig companies who gave me free hair in return for modelling for them. I met some amazing people at Manderville of London, now if you want your own hair back you see these guys. I cannot begin to explain how great their wigs are. Not only that, but also how kind, understanding and thoughtful they all are.

Having these wigs really did improve my mood I started to feel a little better inside. I still had days where I sat and cried but they were becoming fewer. At least I had my wigs to cover up my ugly!

6 months passed and I decided to go back and see my dermatologist. I wanted to get answers to why my hair was still falling out and how I could fix it. Having the wigs was great but I still felt low and I couldn’t swim or sleep in them and the thought of going away or on holiday was a no go. There were always moments when I was reminded of my hair loss.

Following my appointment, I started to feel as though my dermatologist wasn’t taking me seriously, the earlier indents made me very unhappy and the hair that had grown back had now fallen out again. I was now also experiencing a strong burning sensation but only on the top of my head where the hair was – not on the bald patches. I relied less on the professionals I was supposed to trust and did more of my own research, including speaking to others who had or were suffering with alopecia.

I spoke to my cousin, Charlotte (see her story below) as she had received medication to help her hair growth. Once I found out what she was being treated with I went back to the dermatologist and requested he try the same. I was dumb founded to hear he wasn’t able to prescribe the treatment as it wasn’t available to me under his care? Surely all dermatologists should be the same? No – they are not! Feeling really unhappy I left and decided I needed to take things into my own hands.

I paid to see another dermatologist privately to get a second opinion. Luckily, this one gave me far more options and we discussed the treatment my cousin had tried. However, it was a chemotherapy drug (taken by mouth) and was very strong. I needed blood tests, x-rays and that was even before I could take it! Once you had started taking it you had to have weekly blood tests…. I was a little put off. I was asked to make another appointment once the bloods and x-ray were complete. I left – again feeling low. Why was it that the treatment that could make my hair grow back (but not 100% effective) was so bad for me and the rest of my body?

Back to google and the internet I came across a book by Vera Pieffer. “Regrowing Hair Naturally”. I thought, there must be another way, there must be some other reason I have no hair left!

I bought the book and read it cover to cover on the day I received it. It opened my eyes to so many things. It included;

Different types of hair loss

Side-effects of conventional treatment
What tests you should ask for
Causes of hair loss: physical, emotional and other factors
Replacing toxic dental fillings
Getting rid of parasites
Hydrating the body
Self-testing for thyroid health
Self-hypnosis for relaxation and hairgrowth
Detoxing body and scalp
Exercises that help hairgrowth
Avoiding the wrong hair care products
Therapies that help
What to do until your hair grows back
How hair or nail sample analysis can help
Success stories

I was thrilled to have something else to focus on that could help. Vera suggests in the book to have your hair (if you have any left) analysed for issues that could cause the hair loss.

It was £195 to have the hair testing completed which provided a full breakdown and analysis of what was causing my hair some strain and lack of growth. I can honestly say it is the most effective use of £195 I have ever spent. – certainly, the most valuable. The report came back and I was in total dismay at its contents.

It informed me there was MULITPLE reasons for my hair loss. They included intolerances to Gluten, Milk Protein, chocolate, Alcohol, most breads, wheats. I had a high mercury level in my blood, all of this could be poisoning my hair follicles and killing them off. I didn’t understand, I had previously had allergy testing at the doctors and none of this had been picked up? Regardless, the report was so extensive I immediately decided to change my life and my eating habits and I can honestly say, I haven’t looked back since.

Within 3 months of stopping everything I had intolerances to, my hair started to sprout back through – slowly but surely it was growing in the same pattern that it fell out.

I wasn’t on a diet – I was on a life changing plan – I was only eating what my body could handle! Everyone should have a hair test and find out these things, not only did my hair grow back but I also lost 2 stone in weight, I can eat WHATEVER I like within my allowable foods (so not those I’m intolerant too) and I do not gain weight. That’s cakes, chips, even kebabs! (As long as they are gluten/milk free).

2 years on from the date it started to fall out and it was growing back. It was still falling out on top but the back was growing – it was enough for me to see a light at the end of a once never-ending tunnel.

I’m now at my 3-year point and I have a full hair on the back of my head again, however I am nearly bald on top. I’ve gone from looking like I had an extreme undercut to now looking like a monk!

I really do believe all my old hair has to fall out first. It was so damaged with stress and inflammation from such a wrong diet and lifestyle for me – it needs a fresh start. I have about an inch of old hair left to go now.

I still have to wear wigs daily – or hats, but I’ve grown used to that, but I am seeing improvements daily, not just in my hair growth but in my emotions too.

My cousin Charlotte also suffered with alopecia, she also wanted to share her story to help raise awareness of the condition and the effects stress has on your body.

Charlottes Story

My alopecia story started back in April 2014.  It started off with only a tiny bald patch at the back of my head. It just escalated from there! Before I knew it I had patches forming all over my head particularly one right at the front of my head which was very noticeable! I even had my friends on patch patrol on nights out so if one of my patches was exposed they could quickly tell me and I would adjust my hair to cover the patches.

I started off with creams but they didn’t work at all, then I moved onto steroid injections directly onto the patches and a long course of Methotrexate, Folic Acid and steroids. During my treatment, I was lucky enough that my mum was friends with Neagle Cathcart who founded a company called Mane. They created some amazing products specifically for hair thinning however it works wonders on alopecia patches too. This spray would instantly cover my patches and no one would ever know I had alopecia, I could go swimming with the spray in my hair, it wouldn’t run in the rain and it only took some shampoo and conditioner to rinse the spray out of my hair. You could also sleep in the spray and it won’t run onto your pillow. The spray really helped get me through one of the toughest times of my life.

For me especially, having alopecia really ruined my self-esteem and confidence even more than it already was, I was never really happy with the way I looked and never felt pretty or beautiful anyway. So then for my hair to start falling out (which was the only thing I really got complimented on) it just broke me down. I thought that, that’s it, all my hair is going to fall out and it’s never going to grow back again. Obviously, you start to fear the worst.

But in around May 2015 the treatment started to work and my hair started to grow back in all the patches. Of course, it’s a lot shorter than the rest of my hair but the main thing was that my hair was growing back! I felt normal again. Now my hair looks almost normal and you would never know I had alopecia.

I had heard of alopecia before but never ever thought that it would happen to me. The doctors came to the conclusion that my alopecia was caused due to stress. I don’t think people understand that alopecia can creep up on you at any point and you don’t even realise how stressed you are until your body starts expressing it in ways you couldn’t even imagine! I never realised how common alopecia actually is and now I have gone through it, experienced what the condition can do to you mentally and physically I want to do whatever I can to help people who are going through the condition. I want to share my success story so that hopefully it can help others with their alopecia and enlighten people about the condition so that they will be able to cope better with their alopecia journey! 

Discovery

Since talking about Alopecia and discovering so many others have been affected by it including my own cousin Charlotte, I am starting to feel more confident again. I’m relieved the hair follicles are still there, which has made me relax about the condition as I know through relaxation it will grow back. I’ve also started reflexology and yoga classes. This experience of hair loss has made me realise just how much our systems are affected through visible and invisible forces!

Stress and diet play huge part to kick starting alopecia. Keeping healthy through exercise, good diet and meditation with yoga should keep your systems on the straight and narrow.

I hope this article helps raise awareness to the condition and maybe offer some advice to others who may be silently suffering. It really does help too talk, you too might be surprised by who has had some form of hair loss amongst your friends and family.

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My real hair!
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The hair loss
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The growth
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My cover up bandana
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My Wig!
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Low level light therapy

Author:

Hey there, I am a 43 year old mum of 3. I am married to a great guy and live in the beautiful rustic charms of Rutland. I lost my hair over the course of 3 years! Following my wedding party for my 1st wedding anniversary and a series of bad news my hair started to fall out in patches. Slowly but surely all my hair fell out. Devasted I've tried everything to get it to grow back. This is my diary of my hair loss journey .... www.hairlossdiaires.blog

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