Finding AW

Wow. It really is amazing what you can find on the internet these days.
The other day, i decided it was time for me to do some more research on AA and see if there was anything new i could discover on the internet that could help me. Turns out there is, Alopecia World. If you guys don't mind, i'd like to make my first discussion here to be about my story.

I've lived with AA pretty much my whole life, it's nearly been 9 years.
When i first got it, i was in primary school and i developed a large (and by large, i mean like 10cm in diameter large) patch on the top of my head. That patch took 3 years to regrow, and since then i have had multiple, smaller patches develop.

Since my first year of having AA, i have had regular meetings with my dermatologist, and even more regular blood tests. There has only been one year where i finally got rid of all my patches, only to find that 3 months later new ones had finally come to replace the old.

In my attempt to help regrow all my hair, i have tried different shampoos which are suppose to stimulate growth, however none of them have worked. My dermatologist prescribes me a specially formulated cream and every 6 weeks i have multiple injections into my patches. It's been 7 years of continuous injections, and i still keep getting patches.

I've been very lucky, i have always had very thick hair and so i've always been able to style my hair in a way that would cover all my patches. However, sometimes this hasn't always worked.

I used to be part of swim team, and i used to be real damn good. But when i developed AA, no matter how i styled my hair, the water would always find a way of revealing my patch(es). And also recently, i have developed another patch on the top of my head. This is the second one since my very first AA patch, and it is positioned between 2 other patches so that if i'm not careful and my hair moves even a centimetre, my patch will show through.

There have been quite a few friends over the years that i have told about my AA, and they have always kept an eye out for me and told me whenever my patches are showing, so i can go to the bathroom and fix it. They were always good to me, and none of them ever stopped being friends with me for it.

These days there are only two good friends that really know everything about my AA, yet despite having their continuous support... I've find that recently my confidence and resilience has started to waver.

Anyway, i've probably bored you enough already. So, thank you for reading this, it's actually felt really good to write about.

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Replies to This Discussion

Permalink Reply by Lili on November 21, 2011 at 11:28am

Hiding hair loss is hard. I don't have AA but hormonal hair loss (or genetic) and there's no hiding it anymore... but I remember the stress it can cause. I think it's great that your friends look out for you. Maybe you can wear a swim cap? Glad you found the site. :)

Permalink Reply by Tiasha on November 29, 2011 at 6:33am

Hi there,
Thank you for your response. I did try wearing a swim cap, but it just didn't sit well with me. I couldn't stand it and eventually i quit the team.

I'm also glad i found this site. However, when i read other peoples posts about genetic loss and AU, i feel really guilty.
Despite knowing that there are people out there who have lost most of their hair or all of it, and they suffer more than i have ever done so, i still feel sorry for myself.
I really wish everyone here the best of luck.
One day, maybe we can all find a cure.

Permalink Reply by Butterfly* on November 29, 2011 at 10:16am

Hi Tiasha,
I understand exactly how you feel as I start experience that when I was 5 until I was 19. Afterwards I got completly bald...

have you tried hair-colored powder, cream, or crayon applied to the scalp for hiding the bald spots? Back in my "early years" I was using an eye pencil to color the bald spots ;)

Together with a proper style such cream could help...

Permalink Reply by Tiasha on December 7, 2011 at 5:57am

Hi Butterfly,
Actually no i have not.
Does it actually stay on for the duration of a day?
:O

Permalink Reply by Solange De Santis on November 21, 2011 at 1:12pm

Thanks for this information. It's good to hear of a range of experiences with AA. I have alopecia universalis, so my experience is quite different! It all fell out over three months. My decision came down to wearing wig-no wearing wig. I wore a wig for four years and now I don't. It's much more comfortable.

Permalink Reply by Tiasha on November 29, 2011 at 6:34am

Hi Solange,
Until i started reading blogs from this site, i didn't even know AU existed.
Everyone here who has AU, they really do inspire me.
You all have suffered so much more than i have, yet, i find that most of your posts are the most positive of all.
Thank you for reading my story,
I'm glad that you are finally comfortable with yourself.

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