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Please tell me it will get easier
I am 37 years old. I had my first experience with Alopecia 10 years ago, but at that time it stopped at large round patches and I could, for the most part, cover it up. I did the cortisone injections, but I'm not sure if that is what made the hair grow back. Either way, I struggled with it for about 1 1/2 years and was lucky enough to go through the last 8 years with nothing. Until three weeks ago. I noticed my hair coming out, a lot. I knew it was back, and with a vengeance. A visit to the Derm and a biopsy confirmed - AA. However, it's so bad now I would do anything to just have the "spots" but in the last three weeks I have lost about 70 % of my hair. It is thin everywhere, I have patches all over, and I can no longer cover it up. There is hair everywhere, I cry all of the time, and I honestly don't know how I'm going to get through this. I know I"m heading to AT, and I know I only have probably a week until I have to shave my head. I don't even know where to begin, or how to get out of this dark hole I am now in. I would do anything to turn back time, to get rid of this awful disease, but I know I can't. I know I need to stay strong. I am a mom, a wife and I know I need to fight this, but I'm struggling. I haven't left the house all week and haven't even left my bedroom some days. I am not eating, and I just sit and clean up my hair and cry and feel sad. I know I need to get a wig as I know there will be situations when I need it, but I don't even know where to begin. I don't have many friends and there is no way I have anyone (besides my super supportive husband) that I will tell about this. How do we do this?
Replies to This Discussion
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Permalink Reply by Alopecia612 on
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Thank you so much or your kind response. I hate that others have to go through this, but thankful that other people get it. I have begun the process of researching wig shops, but it seems like every wig I look at, even the very expensive ones I can tell are wigs. I don't even care about the cost right now, I would do anything to be normal again. I would give up so much to just have my hair back. I know it's not possible, but I'm just struggling so, so very much. Thank you for taking your time to give me encouragement and for being so kind, it means a lot to me!
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I am a male so I can't give u advice on wigs but I can tell u I know 2 girls with AU. one is 25 and the other 36. both are very attractive and nobody can see they have wigs. you should upgrade your make up skills in case u go AU.
otherwise try treatment like xeljanz.
Alopecia Universalis is hell. the eyebrows... crap... that is a bad feeling.
so unless ur hair just regrow by itself no it won't get better.
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Permalink Reply by Sophie Woods on
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If you would like to add me as a friend on Facebook i will gladly expect as im not always on alopecia world but im always on facebook . Im 29 a wife and mum of 3 children. I have lived with alopecia for 19 years . I am now 98% bald everything went years ago only thing i have left is my eyelash .... and boy do i cherish them.
If i was to give you only one piece of advice , it would be get your a wig , get a good one , DO YOUR RESEARCH !, And dont get sucked it to paying thousand and thousands of dollars on a wig that is just going to either fall apart , not be comfortable, wont stay on (being a mum you HAVE to have one that has some sort of medical grade silicone to keep it on )
There are a lot of different brands and different types of wigs out their so make sure, when you do get one , that it is THE RIGHT ONE FOR YOU !!!
Getting the right hair , will change your way of living and so will getting the wrong wig .
Do lots of your own research babe and find out all the pros and cons for yourself , and make sure the people you are not affiliates or representatives or the wig you are enquiring about as there are so many cons out there ready to take advantage of you
Please add me on Facebook if you want someone , just a friend that knows what your going through.
I will have the same profile pic as on here , My name is Sophia Woods and I live in Christchurch New Zealand if that helps find me .
And i just want you to know that it does get easier . It may take time ,a lot of tears but it does get easier you just have to take it one day at a time .
XXXXXX OOOOOO XXXXX
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Permalink Reply by Alo-mom on
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Dear Sophie, I am the mother of a daughter with AU and you are right on. I attribute my daughters bounce back to good wigs that feel natural and look good. Once she learned how to use certain cosmetics, natural looking lashes and a good human hair wig she was off and running. I actually made a trip to Qingdao China to interview wig factories so that I could go direct to the source. I now design her wigs with the factory owner and have developed a friendship with factory owner. I knew that we could not continue to afford tens of thousands of dollars over the years so the trip was well worth it and the friendship with my factory has made all the difference in how I can help my daughter and others. All my best Alomom
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I will message you, thank you!
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Thank you for your kind words. It is so hard. Right now it's winter here so at least it's justifiable that I'm in a hat any time I leave my house, but it's only a matter of time before it will be too warm or I will lose all of my hair and won't even be able to hide it with a hat. This is the worst thing to live with. yes, I know it could be so much worse, but right now this is so very hard. The not knowing who bad it's going to get, will I go totalis, universal, the not knowing is almost worse. In a way, if I knew maybe I could accept it better?
My kids are worried and it kind of scares them so I try not to talk about it too often. They see me constantly picking off hair and the patches and thinning can't be hidden and I do catch them starring, but I also don't want to scare or worry them . Once I have to shave and once I get a wig then I will talk with them more, but right now I don't want to worry them . . they are kids and I can't talk about it without crying and I need to be their stability. Ugh - this sucks!!! :(
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Permalink Reply by Samantha Callaway on
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It gets better. It's not an easy trek, but it gets better. Try talking yourself up to the exciting part of wearing a wig. You ehave the opportunity to be whoever you'd like. It can be fun. Also, if you lose your eyebrows try Cheryn International for stick on brows. They are awesome and incredibly realistic. They don't stay well in water, but get them with the Ghostbond glue and the adhesive remover. For lashes, I like mink ones from a site called Appeal Cosmetics. They are the most realistic I've found so far. I've had the best luck with wigs.com for affordable wigs. They usually have sales going on so don't buy when one isn't going on. Find a local wig shop that has people who understand and find your style there.Don't give up on yourself. Find what makes you comfortable and grow from there. You will definitely find your way once again.
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