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newly diagnosed w/ mixed emotions

Discussion in 'Newly Diagnosed Alopecians' started by rugsfromme2u, Jan 4, 2012.

  1. rugsfromme2u

    rugsfromme2u Guest

    Hi, I was just recently diagnosed with Alopecia Areata. I started noticing the hair loss in August. I was having several health issues at the time so we figured it was an underlying symptom. I had several lab work and blood tests done. My throid was normal, and nothing stood out except a Vitamin D defiancy. So, my doctor suggested Alopecia, and sent me to a dermatloogist who diagnosed me on the spot. I have lost quite a bit of hair, I was diagnosed with Areata but Universalis hasn't been ruled out. I lost all of my "private hair", and my eyelashes have recently started falling out. I still have some hair on my head, but not much. I cut my hair short, and most of it seems to be falling out at the front and working it's way back.

    I try extremely hard to cover it up, I got an extreme bang cut, so I can comb all my hair forward and cover up my bald spot, but I don't know how much longer I'll be able too. I'm embrassed. I got made fun of at work, by a co-worker. Although, she doesn't know, it still really bothered me. I have told some friends, but I haven't advertised it by any means. I usually keep a lot of emotions to myself, but the other day I broke down and cried in my mom's arms. I was prescribed Clobetasol shampoo and solution and the shampoo just seems to make it worse, when I get out of the shower and brush me hair, I have handfuls of hair. I know, it sounds superficial, but I took great pride in my hair. I loved doing my hair up, and I used to have different feather extensions in all the time. Every piece of hair that falls out, I feel like I'm losing a piece of myself. I really don't know where to go from here. I have another appointment in a couple of weeks, and they're going to see if they want to send me to a hair loss specialist or not. But, I just feel like I'm sitting here, in the meantime, watching my hair fall out.

    However, I am happy I have some answers, instead of playing the guessing and waiting game with the doctor's. I am trying to stay positive, and for the most part I am. But, I can't say that I have my days when looking in the mirror is an extraordinary task for me.
  2. Arisemysoul

    Arisemysoul Established Member

    Aug 11, 2011
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    Hi and welcome. Let me start by saying LOVE the avatar :)

    You are absolutely not being superficial to have enjoyed your hair. And when you say ever hair that falls is like a piece of you is gone, I can so relate. I have not officially been diagnosed but strongly suspect TE which uncovered Androgenetic Alopecia. If that is true it is not coming back normal if it comes back at all. I feel I am running out of time.

    But there are so many wonderful posters on here who are encouraging us to stay strong and remember we are not our hair!

    Hopefully some of the gals on here with Alopecia Areata can chime in on this.

    I am truly sorry you are going through this and wish you the best. I know with Alopecia Areata there is always hope it will go into remission unlike Androgenetic Alopecia which is irreversible I believe :(
  3. haygirl326

    haygirl326 Guest

    HI Rachel,
    I have been "battling" Alopecia Areata for 3 years now. My hair grows and falls out over and over uugghh! I finally went to see a very good specialist in NYC this is what I am on right now: clobetesol drops 5% twice a day. My derm gave me the clobetesol shampoo when I first started losing my hair about 3 years ago.....it didnt do anything for me. Why don't you ask for the stronger 5% drops they are easy to use and do not make your hair oily at all.
    Also NYC Dr told me to get mens minoxidil 5% and use that 2X a day also.....on top of that I am getting the steroid injections 1x a month.
    The specialist told me you try to combat Alopecia Areata by attacking it from all angles (all 3 meds) kind of like you throw 10 things at a wall and hope something sticks!
    I totally get it when you say you lose a piece of yourself w each hair....this has honestly been one of the hardest things I have ever had to deal with emotionally but here are some of the things that have helped to get me thru it:
    1) I got myself a kickass topper (wig)
    2) Never lose hope because Alopecia Areata is so unpredictable you could go into remission at any time.
    3) surround yourself w POSITIVE people and good friends ( that jackass co worker of yours needs to be ignored)
    4) don't let yourself fall into the whole "everyone notices my hair loss" let me say 99% of other people have so much crap going on in their own lives they prob don't even notice your hair.
    I hope all of this helps you some..... I know its hard but no matter how much we can't control our Alopecia Areata we CAN control our attitudes and make other areas of our lives FANTASTIC! xoxoxoxox Tracy
  4. Vlal

    Vlal Guest

    Hi and welcome!

    What a horrible person the co-worker must be. It's so hard to deal with that type of thing when you are in the acute stage of this hair loss happening and don't really know which way to turn. :grouphug: It is okay and emotionally healthy to acknowledge how you feel - have a cry, scream, hit a pillow or whatever... hair loss tends to lead to the grieving process, so feeling the loss of each clump of hair very strongly is quite natural. I think it is worse to hold these feelings in, as eventually they will come out and it's better to let them out when you are in a controlled environment (home, with your family/friends you trust etc).

    I do think you might want to look into some supplemental hair. It's surprising what a difference it can make to the way we feel about ourselves to just look "normal" (whatever that is!) again and not have to worry about whether other people are noticing our hair loss etc. Bearing in mind your diagnosis, I would tend to look for an option that will work for you no matter how much of your hair falls out. The hair pieces and toppers are great, but do require a certain amount of hair to attach them to. It depends how much money you have spare!

    You might also want to take a look at Alopecia World as there are a lot of young women with Alopecia Areata on there and of course there is: http://www.naaf.org/site/PageServer which has great information and support (including support groups and an annual conference).
  5. To Vlal
    Can you provide the link/URL to Alopecia World ? Thanks
  6. rugsfromme2u

    rugsfromme2u Guest

    Thanks everyone for the replies! Having people that can relate, and people that understand makes a huge difference!

    Arisemysoul; Thank-you. I wish you the best of luck, as well.

    Tracy; I was also given the Clobetasol shampoo and the solution. The shampoo just seems to make it worse, I’ve actually noticed more hair loss when I use the shampoo, and the solution really irritates my scalp. I plan to bring all this up on my next appointment, as I also haven’t noticed any changes except negative ones and am already getting discouraged. I will ask about the drops, and also about the minoxidil. Thanks for the suggestions! The steroid injections are my last resort, I hate needles, and I would really hate to do it and have no results. It has helped me! Thanks so much!

    Vlal; What’s a hair topper? I never heard of it. My hair loss is starts at the front, so if I wear my bangs combed straight down and side-swiped over, I can hide it. But, I like to where my hair different ways and that’s already been taken from me. I don’t really know what I can get besides a wig that can cover the front of my head up. =(

    I am taking a Multivitamin for hair and Biotin Forte(5mg) has anyone noticed this helped?
    Also with wigs, I don’t know if I’m at that point yet. But, I have thought about it. Are they costly? And, what about extensions? And, where can I find them?

    Again, thanks everyone for the replies, they have really helped a lot!
  7. Vlal

    Vlal Guest

  8. Vlal

    Vlal Guest

    It's a hair piece rather than a wig. You can get toppers in different sizes, but the majority of the main ones tend to cover either from the front hairline (so where your hair would naturally start) to the crown of your head or are a little smaller in length and are set behind the hairline for women who have still got hair at the front of their head, but are thinning or bald on the middle/crown. Width wise, they also vary. You can get very slim width pieces to cover up a thinning part line, or the more common toppers are wide enough to cover the whole top of the head (approx. 5 to 5.5 inches wide). There are some which are a little bigger and cover the the first part of the sides of the head or just below the crown. You can see an example of one here: http://www.yaffawigsoutlet.com/virgin-e ... -p-39.html. It is expensive because it is made from virgin European hair. You can see that the topper is designed to provide top coverage and hair volume/density. It integrates with the wearer's own hair and is usually 'cut in' to blend with the person's own hair style. The important thing with buying a topper is to get a good colour match to your own hair, as well as, (ideally) getting as close a match as possible to your hair texture. The more expensive wig vendors will ask for a sample of your own hair (if you do not go to them in person to purchase) so that they can match a topper to your hair. You can also get synthetic toppers (made from synthetic hair).

    In theory, you could wear a hair piece provided you could attach it at the sides using clips (regular toppers/hair pieces come with little clips sewn into them - a bit like wefted extensions). Then if some PU tape tab was sewn into the front edge (this gives a surface that you can use some adhesive tape with), you could tape the front of the hair piece down where you have completely lost your hair (using some double sided toupee tape). This would be a little bit of an undertaking. You would also need to have bangs - full or sideswept - to cover the front edge of the hair piece.

    The concern with people who have been diagnosed with Alopecia Areata that seems to be progressive and are starting to also lose hair from other areas of their body, is that the hair on their head will fall out to such an extent that only a wig would be suitable. While toppers don't have to be expensive (depends on the type of hair used and the construction methods employed to make it), a virgin european human hair one would be and it would be pointless buying one of those if you then found you needed a wig not long after.

    Quite a lot of members have decided to try something - some kind of supplemental hair - just to feel pro-active and to regain some control over the situation (as much as you ever can!). So it's hard to say to someone else - you are at the point of needing a wig... or a topper... or extensions, as everyone is different and reaches that point at differing times in their hair loss journeys. In addition, some people choose never to wear supplemental hair - even if they have none of their own. However, I think that if you start to feel uncomfortable in front of others and the way you feel about yourself changes - you start to feel self conscious and wonder if people are noticing your balding area, or you become disatisfied with the way you look because of your hair loss, then that can be a good indicator to start doing some research and have a look at your options.

    Wigs vary in price depending on what they are made from. Synthetic wigs are the cheapest option.

    For human hair, it then goes (in order of cost):

    Highly processed human hair
    Cuticle aligned hair of non-caucasian origin (Chinese, Indian, Mongolian etc)
    Virgin, cuticle aligned hair of non-caucasian origin
    Cuticle aligned European hair
    Virgin, cuticle algined hair of caucasian origin (usually known as virging European hair or VEHH) - the top/most expensive

    The type of hair affects the cost greatly and also where the wig is made and where it is sold. Wigs direct from the Far East tend to be cheaper than wigs bought from Western vendors. however buying direct from the Far Eastern manufacturers can be quite a gamble and generally people find they do not get the same level of customer service or consumer rights they might expect from a vendor in the Western world. At the same time, one also has to be cautious when buying wigs and hair piece (especially human hair wigs/hair pieces) from any source, as there are (unfortunately) unscrupulous people out there who will try to make money off a vulnerable person who may not know exactly what they need/are buying. Fully hand tied wigs are more expensive than those made partly from wefts (due to the labour involved in making them).

    Extensions - generally are not suitable for loss on the top of the head as it is difficult/impossible to hide where they are connected to your own hair. They can also cause traction alopecia if not careful.

    Hope this helps a little.

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