Alopecia World
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My story
Hi all!
I decided today to look at some alopecia websites today for the first time. I had an idea that a lot of people have alopecia but I had NO idea how badly some people struggle with it. Reading some of the posts below put things into perspective for me so I decided to tell you all about my alopecia story.
I am now 20 years old and I have alopecia universalis. I got it around this time 3 years ago. It didn’t all fall out at once. First it was a slight loss of my eyelashes. When my doctor told me I must’ve rubbed them off I felt like punching him in the face but minor details. My mom and I knew that things were getting bad then.
Later I noticed a small patch at the top of my head and thought it would just be the usual but within two months I lost about 85% of the hair on my scalp. Along the way I also lost the hair on my whole body. I believe the trigger was a little surgery I had to remove my wisdom tooth. Since then I’ve tried two treatments – steroids which gave me hope and then shattered it (a point at which I gave up on hoping my hair would grow back) and an allergic reaction therapy (I can’t remember the name right now) which caused and allergic reaction on my scalp that was itchy as hell! It made wearing a wig a little more uncomfortable than it already was.
Since then I’ve had small regrowth but it all fell back out again. I have left my hair to do as it pleases. This summer I noticed a little regrowth again but this time around I decided to shave off whatever hair grows on my head in hope that it will grow back stronger and so far it’s been working. The hair I shaved off seems to be growing back stronger and I’ve shaved it a few times now. So fingers crossed!
I’ve had my low days where I would get really upset about it and very angry and frustrated and I know that’s okay. It’s healthy to let the emotions out once in a while. However, my attitude is that this is not the end of the world! As a teenage girl it was hard for me to lose all my hair but it didn’t completely get me down. All the girls at school had lovely eyelashes and brows I envied and hair so long that made me think ‘if mine started growing now it wouldn’t be that long for 10 years’. I try to think of this as a chance for me to develop my character. It could’ve destroyed me but I didn’t let it. I can’t. Hair doesn’t define who we are. It definitely gives us confidence but it honestly isn’t the end of the world in my opinion. You can always put on a wig and do your make up! As a lazy person I find that the wig is so convenient! And make up can really do wonders! I can’t speak for males but I know it isn’t as easy for them to cover it up.
Don’t let this get you down! You can get through it and as we can all see we’re not alone in this.
Sorry about the length got a bit long
Stay strong xo
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Comment by Steve on August 11, 2015 at 3:19pm
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I love you're attitude towards this all. This is exactly the way I am trying to approach this now - it's not the end off the world. What will be, will be. We will always get our low days but we have to learn to deal with these and turn them into positive vibes. I also want to thank you for the comment you made in regards to men. I often think many people think the disease is a-lot easier for us and that really isn't true. Thank you not noticing and understanding that.
Stay strong!
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Comment by Lauren@CornerofHopeandMane on August 11, 2015 at 11:36pm
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Great attitude! I love just throwing on my hair and getting on with my day, too!
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Comment by Jlhollow on August 12, 2015 at 9:06am
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This is exactly what I needed to read this morning, I have good days and bad days and these past few days have been tough. In the end, I know that I will be ok.
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Comment by Roksana on August 20, 2015 at 10:48am
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I live in Ireland and there are shops here called versacchi that's where I get them. They're imported from the UK though from a company called trendco London. After about 6 months the hair tends to thin out a fair bit and since I get a grant towards them I get one every year
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Mags I am not 100% sure but I think it's monofilament. At first it almost looks too full but after a while it just looks normal but then it starts to this out a lot. right now I'm having troubles covering the front band of it as there isn't much hair left there.
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Comment by Rach1992 on August 23, 2015 at 4:00pm
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:) Yay, I like to read positive stories about other young ladies with AU like myself. I got it at 21 and in 8 months every hair on my body fell out. It's been a few months without any hair and it's not too bad. I don't like wearing wigs too often because they're hot and it feels weird to be wearing something that's not "my hair" but I like wearing headscarves. More power to the hairless ones :D
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I love reading comments like yours, I was in my 50s when my hair started falling out and remember felling like the world had ended.Then I read about such young people like you and the way you deal with it is inspirational.
Hope there is a cure because you certainly deserve one.
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Comment by Lexi on September 8, 2015 at 6:20pm
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You got your wigs where? Do you mean Versace? They are Trendco wigs? I just viewed their website...they have some kind of Gem wigs. Is that what you are wearing? Love the blonde....I need that color....
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Comment by Cindie on September 9, 2015 at 12:15am
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You are a very lovely young lady.
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Comment by Dorothy on September 9, 2015 at 3:28pm
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I admire all the strength that people seem to have about all this. Then again, 42 years ago, I did not have Facebook and I was not told there were any other people like me, so I suffered alone not knowing what was wrong with me and treated by my own doctor like I was some sort of freak. So, I had one heck of a time adjusting to all this. I am glad that things are better in that respect, but not happy that in all this time medical science has really made no progress towards finding a cure. I am thrilled that there is support out there for us to find others, so essential for us to adjust and gain a healthy self esteem. Always hope for a cure, but realize we may not live long enough to see one. At least that is me after 42 years.
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