My story begins in the early 90’s where I first started noticing bare patches in my facial hair. Every time that I shaved, I noticed these few small areas grew small whitish hairs and were surrounded by much darker stubble. I shaved regularly so that these areas were not as noticeable, and at that time these patches really didn’t bother me a great deal.

“Life went on as usual”.

Little did I realise at that time that this was only the beginning of a 25 year journey for me and one that I’ve struggled with now for nearly half of my adulthood life and it still challenges me today.

Shortly after that, a small section of my eyebrow disappeared and I was in absolute horror.

“What was happening to me?” “Why me?” “Did I really deserve this?”

I tried to hide the embarrassing small patch with an eyebrow pencil, it wasn’t a great solution to my problem, though I felt it was the only solution I had at that time.

I really didn’t want to go out of my home a great deal apart from having to go to work. I   preferred to stay indoors and isolated from the cruel world that has forced this disease upon me.

“I was confused and completely gutted”.

I had no control over what was happening to me and as the patch increased in size and become more noticeable, it became impossible to hide and I had to live with the ridicule of people making unwanted remarks and smirking at my misfortune.

My self-esteem was at an all-time low and I have to admit, if it wasn’t for the support of my wife and family I would have just ended it all there. I felt I was in such a dark place that there was little I could do to change my now depressing life. Medication helped me feel better for a short time though the Alopecia was there for the long term and nothing I could do would change that.

I saw a skin specialist and over the next couple of years I tried everything possible and my Alopecia did seem to improve at times. Just as I thought it was getting better, it would return with a vengeance. A large portion of my eyebrows were gone, my eyelashes were gone and by now, large clumps of hair were disappearing.

No matter how many times I was told “A least it is only a visual thing”, it really didn’t give me any confidence and as far as I was concerned, “I may as well have had cancer”.

I really felt that things could not get any worse and I was at an all-time low. I recall my supportive wife the first time I shaved my head, saying to me “It doesn’t look that bad” of course I knew she really was only trying to comfort me.

By now it was the late 90’s after dozens and dozens of visits to a specialist, where I had 30 painful Cortisone injections into each of my eyebrows, light therapy, tried topical steroids and just about anything else I could try, I was really frustrated and felt that things just could not get any worse. “What other embarrassing situations could this disease throw at me that I haven’t already struggled through?” I had experienced it all and nothing could make it worse than it already was.

“I was VERY wrong”.

I had lost all my self-esteem, I had a lack in confidence, even though I knew it was only a visual thing and had no health implication, it was a difficult thing to accept and the support of my wife, helped me get through the hard times.

Just when I had come to terms with everything that had happened to me over a 15 year period, I felt that “It was something I just had to live with and come to terms with”. “The worst was now behind me?” Boy how wrong I was.

Little did I realise that what was to follow would throw me another curve ball.

In year 5 of school and at the age of 10, my son Stratos suddenly started losing clumps of hair. Not only did I have to live through my own struggles with Alopecia every day, now my son had it and I felt it was all my fault. “How can a ten year old survive the torment of having to cope with this disease?”, “Is it genetics and am I’m to blame for passing this horrid disease onto my son?” So many unanswered questions. My own Alopecia problem now seemed to sink into insignificance in comparison to the other problems I was faced with.

Children can be so mean and the bullying at school was intense. Even though Stratos put on a brave face, I knew it was a difficult time for him and even now at 17, the bullying does continue though he has learned to cope with it after a continuous 7 years of being completely bold.

My heart sinks to the ground every time I think of what this disease has done to my family and try to continue with the thought “At least it’s only a visual thing” though this still gives me little comfort.

To make matters much worse I have also had to live with severe Tinnitus for the last 5 years and with the constant ringing in my ears 24 hours a day and never having a decent nights’ sleep in years. It has really taken its toll on me both physically and mentally.

There is not one day that goes by that is not an absolute struggle to survive through. I feel that everything that god throws at us is done to make us a better person and the person that we are today.

Our personality and ideals are moulded throughout our lives so that we become more understanding and respectful of others and their problems. So many times I have told my children that when someone is “Rude” and maybe even “Bites your head off” it may be for the reason that you don’t know about. Maybe these people are going through difficult times, maybe their parents are going through a divorce, maybe they are being abused and this is the way they respond in order to make themselves cope with their own lives. “Accept people for who they are”.

When you understand that people may act in the way they do for a reason, then you will become a more understanding and compassionate person yourself.

Now in 2015 and after 25 years of living and coping with my own demons, the pain does not ease off at all. Having two members in one family is difficult though with my younger son now showing signs of Alopecia, I find the rollercoaster ride just starting to peak again.

There is no easy solution to this disease other than trying to accept it for what it is, and ignore those who look at you like you are less of a person than them.  

I have grown to feel enjoyment from the praise of others because of everything I achieve, and this comfort does drive me to want to achieve more and help others. The “Thank you” that I receive from others does make me strive to push myself further and reach goals that I set for myself no matter how insignificant these may seem to others.

“Be Strong, Achieve and Live your Life”.

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Alex- thank you for sharing your story. You are brave and so ia your son. I have been dealing with AA for almost 20 years and I know and understand your struggles. It is almost like a cancer of the hair. Very emotionally and very mentally debilitating condition. I too have tried every treatment under the sun. And although some have worked to initiate hair growth, once the teatent is stopped, the hair falls out again. I am following the different posts with feedback on Xeljanz. I can't say that I am completely co convinced yet. Hang I, there! Blessings to you and your son :)

Thanks for your message TMB... Yes it has been a struggle and Xeljanz seems like to only option left not though sadly with the medical system in Australia we will never have access to it for Alopecia and only for use with Rhumetoid Arthritis.
I' hoping that in the next few years it will become readily available and we can all use it to grow our curly locks back :)
It is a dreadful disease and only people like us really do understand the effects it really does have on ones emotional state and confidence.
Gotta push on for the sake of those around us :)  

Yes, we must keep pushing along and thats all we can do. All the best to you :)

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