(PART ONE)

 

If you have read my profile you will have already discovered that I am some what…different?  This difference is due to a condition I have called Alopecia, and I think its a good idea to begin this article with an explanation to what Alopecia actually is. Ok, so Alopecia is basically an auto immune disease and an auto immune disease is defined as ‘a disease in which the body produces antibodies to attack its own tissues’.  It isn’t as scary as it sounds!  In Alopecia’s case the body creates anti-bodies to attack hair follicles, causing hair loss.  Other auto immune disease examples other than Alopecia include diabetes, arthritis,eczema and asthma, so compared to other auto-immune diseases, Alopecia is not as painful physically but definitely mentally.

Further Facts About Alopecia:

  • There are three types of Alopecia: Areata, Universalis and Totalis
  • Alopecia Areata is hair loss in patches.
  • Alopecia Universalis is hair loss everywhere/all over the body (yes I mean all over the body… you don’t have to shave…)
  • Alopecia Totalis is all hairloss from the head only.

(I have had all three types of Alopecia.)

  • There is no direct cure for Alopecia although there are many treatments that can help aid regrowth.
  • Your hair could grow back at any moment, you could have Alopecia for a month to a lifetime.

So now we have cleared up what Alopecia actually is, lets head into the first installment of my Alopecia story.

The first two and a half years of my life were normal and I had a full head of hair. Curly blonde locks to be precise.

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When I was two and a half, I developed Alopecia. According to my Mum (cause I cannot remember when I was two and a half. If you can remember being that age I am very impressed!) we went swimming and she could see that my hair was thinning. The nursery I went to also reported my hair beginning to come out in little clumps on the pillow when I was having a nap or pulling away really easily in clumps when they stroked or brushed my hair.

So off we went to the doctors to figure out what on earth was going on. The doctors referred us to the dermatology department who originally thought I had loose antigen hair syndrome (where your hair can easily be pulled away) but over a period of six weeks my hair just kept coming away till my locks were all gone. So the dermatology department took a hair sample and after wondering a very long time what was going on they finally diagnosed me as having Alopecia.

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This photo was taken on my 3rd Birthday just after I was diagnosed with Alopecia.

 

That Christmas, my parents organised a special trip to Disneyland Paris to cheer us all up.

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As I was very young when I first developed Alopecia, my parents decided to not try any treatments and to just see what happened. I had severe Alopecia Areata as I still had patches of hair on my head but they very sparse, however I still had my eyebrows and eyelashes.

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About two years later, just as I was starting primary school in the September, my parents decided that we would try a steroid to see what happened. For three months we applied a steroid liquid to my head and gradually through these months my hair grew back thick,black and in patches.

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But eventually I had a full head of thick black hair!

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However, I was still very young and the steroid we were using was a very strong one.  There were implications that the steroid may have been making me ill so that December, three months after we started using the steroid, we decided to stop using it…  Almost immediately after we stopped the use of the steroid, the regrowth came to a halt and my hair began to disappear once again into patches and eventually to no hair at all on my head.

For a while my hair used to grow back in patches and then fall out again. It generally used to grow back in the winter and then fall out again in the summer.

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During this period of time, we went on holiday to Cornwall. My hair had grown back in little clumps and patches and I was able to get a hair braid! I was over the moon with being able to have this braid as all my friends got them when they went on holiday but I never could because beforehand I had no hair to braid.

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It didn’t last too long though…my baby brother decided that my hair braid would be fun to play with, pulled it and because my hair would easily come away, it fell out! As you can imagine I was not happy…

Eventually my hair stopped growing completely and I became Alopecia Totalis as I had no hair on my head…at all…

And then my eyebrows and eyelashes disappeared too and I had Alopecia Universalis.

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And that’s were we will leave the story for now!

It was a bit difficult to write the beginning of my Alopecia story as I can’t remember myself being that age and had to constantly refer to my parents to what actually happened, but I will be doing a lot more blog posts like this were I can give a lot more detail of what life with Alopecia is like. After all we have 16 years of Alopecia to cover!

I think the sequels to this story will be a lot more exciting to read as they will be less about the actual process of losing my hair and more about subjects such as getting my first wig and Alopecia meetings I have attended…and there are many funny stories to tell!

I hope that this blog has either informed you of what Alopecia is and what it is like to live with Alopecia or for those fellow Alopecians out there, that you have found comfort in knowing you’re not the only one and you aren’t alone in this!

 

Published by Emma-Rose