Auto-immune condition.

Alopecia areata is a common autoimmune skin disease resulting in the loss of hair on the scalp and elsewhere on the body.

Alopecia isn't cosmetic hair loss. Its is an autoimmune condition that is linked to other autoimmune conditions. I have had Alopecia Unversalis since I was a young child. My teenage years were extremely difficult and I suffered greatly emotionally due to this autoimmune conditions. I never gave up though, deep within me was a rage to not let this thing win, a persistent defiance to not let this thing dominate my life.

I survived that time......just.

Into my early 20s things improved greatly, I went "home" to Ireland and it is while living there I found strength and support from which I guess you could say I found myself and started to become the person I am today. The rage inside me still existed but it was no longer dominant as Alopecia started to have less and less effect on my life.

But the rage turned into a hunger. A hunger to know why I had alopecia since a young age, why I was alone with it, why why why. The question "why?" has niggled me like the sound of a dripping tap in the night.

Fast forward to my late 20's. I found the alopecia UK on-line forum and discussing alopecia reopened old wounds and these wounds were deep. But in unity there is strength and this grief process became such a healing power it did me a great deal of positive direction.

But still tap, tap tap of that drip. Why, why, why ?

On various forums (Alopecia World, AASC , Alopecia UK) and in person I have talked to hundreds of people with alopecia around the world, mostly new sufferers. Sharing my experiences has helped them and it lead my life in a direction where I wanted things to be better for people with alopecia in NZ.

But still that tap, tap tap of drip. Why, why, why ?

I was asked some time ago - What would I do if my daughter got alopecia ? And my answer ....I will be the best person to help her through it.



In 2010 I started to create an on-line resource for people with Alopecia in NZ with a lovely person in Auckland. Unfortunately fate intervened and my comrade was too busy, then the earthquakes came to Canterbury and it took me another 6 months to get my website up. I created alopecianz.co.nz and  face book pages and I started to organise coffee meet-ups in Christchurch and the odd one in Auckland. I've done this now for about 2 years but it becomes tiring being a one man band and my own life was demanding more and more time so my energy has faltered.

But still tap, tap tap of that drip. Why, why, why ?

Then some other organisations popped up on the scene, recently there was a conference organised, the first of its kind in NZ. Great Stuff ! So I went to the conference regardless and it was good for new sufferers with alopecia, the support, the speakers and the communal spirit. I saw a lot of people that I have known of spoken to and it was good to see how they are all getting on. It was good to see people finally stepping up and taking some action, to see people being supported, to make things better for the current generation.

I then met a very young boy with AU and I then saw his life future through my eyes.  Then I thought of my daughter. The dripping tap got louder and its echo has been persistent for two weeks now


To be honest and don't get me wrong (I've been in the alopecia "support" side of things now for a while so some of it was old news to me) I didn't get a lot out of the conference personally.  What I did get easy an uneasy feeling of acceptance and its not sitting right with me. Not the personal acceptance of alopecia, but accepting that nothing can be done about it.

What of my daughter ?- If she gets alopecia (Its my greatest fear) what will she say when she is old enough ......Will she say "Why?". Yes she will, but if she is like me it will be "Why didn't you do anything about it ?"

And that's it. Have I accepted alopecia ? Am I happy to let fate play Russian Roulette with future generations, knowing what I know, knowing what dark places alopecia can take you. Am I happy to just leave it at that ? I feel that hunger turning back into something else, something that is making my inquisitorial mind whizz and purr.

How do I fix a leaking tap ?

I don't wait for someone else to do it.
I strip it apart, I identify the cause, I identify a solution. If I can't find the cause,I cross the investigation off the list and try another approach. I talk to people who also have leaky taps, I keep trying until it is fixed.

Of course its simplistic comparision - the human immune system is (slightly :)) more complicated than a tap. But the approach should be the same.

There is no magic wand solution to this all. Only a unified scientific, methodical analysis from top to bottom will solve this. Research with no findings is better than nothing at all, as it means others can look at the results and compare\adjust\scrutinise. They can't do that if there is no research at all.

We can't cure what we don't know, and we can't fix something if we don't know what is broken it in the first place. But we can start working out why right now.