My Alopecia Story

I have been putting this off for a while now, i don’t really know why, i guess its like opening up old wounds. Anyway as i sit here with my hair free head here’s my story so far…….

A little over two years ago i noticed whilst in the shower and combing the very expensive conditioner through my really long, thick, glossy hair that i was shedding a little more than usual. I thought nothing of this, that is until my next hair wash. This time a little more hair than the time before came out at that point I started to worry.

How it began

My  scalp became very itchy and painful and when I scratched it I noticed tiny little sharp hairs under my nails just like when you go to he hairdressers and get the very ends of  your hair trimmed (I later found out that these were called exclamation hairs and are basically the root of the hair follicle that has been attacked by the Alopecia). I remember most vividly saying to a friend at work that i was loosing my hair and showed her by simply running my hand through it. She told me not to be so daft and that it was just the time of year. On my next hair wash, which I was putting off, the hair shedding was worse than ever. I lost two huge handfuls and later the next day discover my first bald patch.

When I tied my long hair up, as I often did, I felt a thinness at the back of my head and for one terrifying moment I though I could feel a soft, hair free patch. I ran to the mirror with a smaller mirror in hand and yes it was there, a perfectly round bald patch. Time stood still in that moment and I felt like I was being swept away in a tidal wave of emotions. This surely couldn’t be happening to me, my hair was my crowning glory, my best feature, my friend!

Helpless and afraid

But, yes, it was happening to me and for the first time in my life I felt helpless, alone and afraid. You see, I am used to taking control of situations, of somehow making things right. Not this time, this time I could do nothing but freak out and go straight to Google. Now Google was not my friend, it showed me men, women and children with huge amounts of hair loss, patches and in some cases total hair loss. This isn’t going to happen to me I said, it can't happen to me, I wont let it!

Taking control

I had to take control so with that I took myself 600 miles down country to Philip Kingsley’s, even though my GP told me it was a total waste of my money and that my hair would grow back. When I got to the clinic in London I felt emotion like never before; I left that place knowing that I was going to loose all my hair. They hadn’t told me that directly but all the signs and language they used was there. I just wanted to get home.

Fast forward six weeks and my hair shedding was at its most aggressive. By this point I had lost over 50% of my hair. I was doing all the right things, not drinking alcohol or caffeine, not eating gluten or sugar and taking lots of supplements and exercise. But still it didn’t relent. I was travelling up to Newcastle every week for Minoxidil treatments and UVB light treatment. I had to do everything in my power to try and stop this disease. It didn’t help, my hair was losing the battle and I was losing my battle too.

It took a further 6 weeks of my hair just falling out in front of my eyes and constant pain and discomfort on my scalp until one day, after washing my scalp I counted I had 26 hairs left. This was such a surreal moment for me but I still had a tiny bit of fight in me so I decided to cut them off. There I had done it, I was now totally bald.

Dark times

The weeks following this were very dark and sketchy. My mood became the lowest ever I just felt utter hopelessness and loss. I didn’t want a soul to know about me and I definitely did not want to leave my house. At my lowest ebb, I suddenly thought of my beautiful mum whom I had lost to breast cancer when I was 21 years old. She fought to her very last breath, not once complaining, always smiling and thinking about others before herself. At that point I could see out of the darkness, I had to keep going, living.

Fast forward another 6 weeks and by this point I had lost all my eyelashes and eyebrows and body hair and had developed the most horrendous Atopic eczema and follicuitous. 50% of my body was covered for over 3 months. This was a result of the massive inflammation in my body caused by the Alopecia. I just kept thinking, what next? Why me? Enough is enough!

Hope and happiness

Now, over 12 months on I can say I am happy. Alopecia has taught me to be a better person, to love life and live it to the fullest. It has given me the opportunity to meet some amazing people all over the world and to be involved in some amazing projects and charities. Most of all though it has taken and led me onto a new and better path, it has allowed me to create Glamorous Butterfly!

To all those out there with hair loss worries don’t let it eat you up, because it will, it takes no prisoners! Be proactive and control it! If you have any questions, thoughts, or worries about any type of hair loss please get in touch and I will be more than happy to talk to you and discuss possible options. My door is always open.

Love Ness xx

Published on the World Health Innovation Summit on 22 June 2016

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