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Thought I was an Alopecia Universalis/AT expect....until now...

Discussion in 'Women's Alopecia Universalis & Totalis' started by iwantmyhair, Nov 20, 2013.

  1. iwantmyhair

    iwantmyhair Guest

    Sorry this is so long, been struggling with this condition a long long long time. :ermm:

    I'm a new member, but by no means new to this insufferable disease. However, ever since I started losing my eyelashes last December, I've been inconsolable, and so depressed and demoralized that I run the risk of losing everything I have worked for (career, academics, relationships, etc).

    A little about me:
    I've had this condition now for nearly 20 years, and spent the past ten years accepting that this was part of who I was, and feeling confident and beautiful, until now.
    I was diagnosed with Alopecia Areata when I was four years old, when a few patches appeared on my head that vanished after a year or so. I also suffered with severe eczema from 6 months old until early adolescence. For most of my childhood, I had gorgeous, dark, thick and lustrous hair, until I received my first menstrual period at age 10. My hair started thinning, I got bald patches, and shortly before I turned 12, I was completely bald. Tried PUVA therapy, all kinds of medications....all with no success. I then lost my eyebrows, eyelashes and most body hair shortly before I turned 15, and it remained that way until several months before my 17th birthday, when voila, my lashes returned, as did most body hair. I should note, I began applying DNCB .5% regularly from 14-17. It burned, it itched, it sucked. But I think it worked. By the time I was 18 years old, I had a boyfriend, was on birth control, and had a full head of hair, with lashes and eyebrows to boot! Life was awesome....at least until my hair fell out again nearly a year later. But even thought I lost my scalp hair and most of my eyebrows, I always kept my eyelashes and most of my body hair (arms and legs varied in patches and thickness through the years). In fact, at age 22 I even got my eyebrows back for 2 years (although I lost the boyfriend). In sum, I learned to accept and incorporate my alopecia into my identity and no longer feel sorry for myself. I've always worn a wig, became a master eyebrow artist (they're tattooed now), and quite the make up artist I might add. As I progressed into my 20's I was a knockout, I learned how to dress my body, how to style my wigs in a natural fashion, dated ALL the time and had no difficulty attracting men. However, I felt normal because I had eyelashes. Anytime my lashes became sparse or the alopecia flared up I became obsessive about checking the lashes, tugging on them to see if they fell out easily, and wincing anytime the lash line became itchy or irritated (cause you know that's never a good sign). Despite all this, THEY NEVER FELL OUT. EVER. Not since I got them back at 16-17. Furthermore, I never really applied the DNCB after my 20s, only as needed. I felt it wasn't really that helpful.

    Fast forward to today. I turned 30 last year, and had been dreading this monumental life event since I was 28 (got off the pill also at 28). Couple months after my birthday, I began noticing gaps on my left lash line. I worried, of course, but knew my body all too well. My lashes get thin, I usually slap on some DNCB for a month or so, and voila, the lashes stabilize and all is well. So I did my usual, and it didn't work. My lashes on my left eye have been not only dwindling, but only the last 1/4 of my upper and lower lashes are left, while my right eye has some gaps and is really thin. Body hair is also splotchy, which isn't completely uncommon during a flare up, but the lash baldness is. I feel so utterly depressed. I know my lashes will fall out, and if they do, I don't know how to cope! During my adolescence I was highly depressed, introverted, and even suicidal. I was teased, ignored, and made to feel like an alien. I never felt beautiful. I hated myself. It was a difficult time, and I chose to pursue a career in psychology, focusing my research on the this area. But I feel so miserable. I've been applying the DNCB, started cortisone injections in my lashes and brows (only a few times in the past six months), have been doing an ani-inflammatory diet, been gluten free, am about to purchase herbal supplements for stress and anxiety. I know that as I have progressed in my graduate program, I have been the most stressed I have ever been in my life, wonder if that is why the hair loss has been so bad. In addition, I'm in a relationship and I've hidden my alopecia from him for the past 6 months, with the lashes receding I'm forced to tell him which I'm dreading. I guess I'm reaching out for help! I don't know how to cope and what to do (yes, I have a psychotherapist). My lashes made me feel so beautiful, made me feel "normal", I was able to camouflage my condition with them. Without them, I feel as alien, ugly and abnormal as I did back when I was 15 years old. I just want my lashes to stay (my brows would be awesome, but I'm cool without them). Not even my hair, just my bloody lashes!
     
  2. dancer

    dancer Experienced Member

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    Hi and welcome :)
    Sorry to hear your eyelashes are starting to fall, like you I have learnt to embrace all the other loss but the eyelashes have been the biggest challenge, but form somewhere deep down you do find the strength to cope :grouphug:I am sure you will too. I do wear false ones but not all the time as it takes me ages to put them on! It sounds like you are an expert on make up I am envious :)

    I agree you get to know your body when you have had alopecia for so long and somehow you know when things feel different, I just hope you are wrong and your lashes start to grow again. I didn't have any regrowth from my early twenties until this last couple of years where they are growing back very fine and very very short and that's as good as it gets at the moment, but at least they are trying maybe one day I will be able to use mascara again

    Wishing you the best of luck x
     
  3. jacqui77

    jacqui77 Guest

    Hello and welcome.
    I agree with Dancer. Like her, I have been suffering from AT for many years. I'm 36 now and lost all my bio hair when I was 18. I was depressed and worse for several years, well into my 20s. I gradually came to accept my situation.

    I must ask though, why you haven't told your boyfriend yet. I know it is very difficult, nearly impossible actually, but it only gets more difficult as time passes.

    Best wishes,

    Jacqui
     
  4. Tara49

    Tara49 New Member

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    Wear false top lashes and just a bit of a smokey look with eye. pencil on the Bottom. I use a natural lash and add mascara to make them more realistic. I re-use mine 4-5 times. You'll be fine. Just be glad you're a girl and have all these wonderful options. Use a latex free lash glue to avoid sore lids.
     
  5. Gina

    Gina Member

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  6. Gina

    Gina Member

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    Gosh I feel for you ,you have been positive and have believed in your self this long in this frivolous society...You give me hope.hang in there I bet you are a beautiful person.
     

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