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Alopecia Universalis Immediately?

Discussion in 'Women's Alopecia Areata' started by Gorgi, Aug 6, 2006.

  1. Gorgi

    Gorgi Guest

    Have any of you, over the age of 40 (that last bit is important) developed Alopecia Universalis immediately? I mean, the hair loss began and it ALL fell out, and took a few ... minutes??

    I started losing hair at age 49 - I am now 51 (million, it seems - pass the Extra-Strength, This-will-get-your-ass-out-of-bed vitamins :lol: ) My derm was blown by that; she said she had never seen a woman my age develop such severe alopecia - ever. She also assured me that I had an excellent prognosis for "reversal" of the condition. She said when she sees children with this, she feels so bad because children with Alopecia Areata can be like JoAnn - remission folowed by disease, followed by remission, etc.

    But what happened? I went from that appointment to losing all my hair, lashes, brows, body hair - within weeks. The only place I grew hair and kept growing hair was where she gave me injections. But I forgot that I am allergic to steroids - I get severe dermatitis from them - and not until I started scratching, getting rashes and hives did I remember this - so we had to stop the shots. But I never stopped growing hair where she did the injections. That time, I looked like a calico cat!

    I went into remission for 6 months with use of cyclosporin, but of course, had to stop that drug because it's so dangerous. We had hoped it had kicked me into a total remission, but noooooooo.... :evil:

    And the second time, I just started losing it all right away and went Alopecia Universalis like NOW. My scalp hair broke off at the scalp line - a total anagen effluvium. So gross. My arm hair spiked up off my skin, as did the leg hair. I shaved it all off, but oddly, I have stubbles on my legs and arms - but not my scalp. Smooth as a baby's behind, it is. :(

    So, has this happened to anyone else? Or am I just bizarre and maybe from the planet Pluto, and my parents found me under a glowing pumpkin?

    No, it can't be that, cuz I look terrible in tights and a cape, not me at all.
  2. redclaire

    redclaire Guest

    Gorgi... I can't remember for sure, but I think Merk lost hers overnight.
  3. Gorgi

    Gorgi Guest

    If that is true, and it has happened to me, I would not be here today. No way. I wouldn't have had to do it myself - I would have just died of a heart attack - or of hysteria - I cannot imagine it. I shudder at the idea of all one's hair being gone in one day - wake up and your hair is on the pillow, look in the mirror and you have no eyelashes or eyebrows, just brush hair off your arms...

    That's how I am seeing it and oh, yeah - I would have died of fright.
  4. Joann

    Joann Moderator

    Mar 25, 2005
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    Hi Gorgi ,

    I'm glad that Alopecia Areata hasn't taken your sense of humour. I laughed when I read the part about the cape and tights. :lol:

    Claire is correct. Here is Merk's story:

    "I became Alopecia Universalis within a 24 hour period almost 6 years ago. Luckily it was on a weekend and I rushed into the city to get myself a wig. I guess I was in such shock that I bought almost the first one I tried on and it was an absolute horror. I returned home and applied eyeliner to make eyebrows and cried, applied and cried until I came up with a shape I could deal with and I felt looked half decent, in my eyes of course. I also applied liquid eyeliner and cried, applied and cried some more until I got a width of eyeliner that didn't make me look gothic or make me appear as if I belonged in a Hard Rock Band.

    I was still teaching at the time and I refused to stay home and hide myself --- so, Monday morning I got up very early and applied eyeliner for eyebrows and liquid eyeliner to my eyes. (I've since learned little tricks to help the eyeliner eyebrows stay on without rubbing off on the wig --- so that at the end of the day they are still on), put on my horrendous wig and went to school and acted as if nothing had changed ---- even though inside I was just mortified and dying of embarrassement. I was very lucky NOT one person Teacher or Student commented on my altered appearance. I came home and heaved a sigh of relief and finished of the year without incident. As a result of that first day back to school with my altered appearance I have adopted a mantra which is THINK POSITIVE/ACT POSITIVE/BE POSITIVE. Believe me it works and I can't stress often enough IT WORKS. If you act the victim ---- people don't know how to approach you and therefore they ignore you. So you have to take the proverbial bull by the horns and ACT as NORMAL as can be. It pays off BIG TIME.

    Always remember that you are a WORTHY person ---- worthy of LOVE, FRIENDSHIP, UNDERSTANDING, RESPECT and most of all SELF-RESPECT. The only person who can take this away from you is YOU. So, hold your head up HIGH and FORGE on with PRIDE ---- YOU are worth it and whenever you feel yourself feeling down and out of sorts try to picture all your fellow Alopecians on this site, the NAAF site and the MSN site ---- walking beside you in SPIRIT. This is one humungeous(sp!!) group of people. This also works.

    Walking with you in SPIRIT,

    Her and I first met on the NAAF messageboards and have become good friends. She is a Canadian like myself and we are lucky enough that we live close enough to be able to get together occasionally.

    Thought you might like to see a picture of us that was taken last month when Merk came to Toronto for her consultation for tattooed brows and eyeliner. She had them done that same day :D

    Hugs. Joann
  5. Gorgi

    Gorgi Guest

    Thank you, Joann! I have often thought about eyebrow tattooing, but I am so frightened of the idea of the needles - not the pain, but the fact that I scar so easily.

    I went to place near my home and the girl scared me to death. She told me that after a while, I would get scabs, then it would look as if the tattoos went away since scabs and extra skin would grow over them - and then flake off.. I got the creeps. She said it would take 3-6 months before I had the "finished product" look.

    She also did not understand alopecia because she said, as soon as I tattoo on your eyebrows, the hair will start to grow back like crazy.

    I canceled the appointment.

    I suppose I should shop around because I'm not getting any younger and it will get more and more difficult to see up close - but I have to admit that I am still hoping my alopecia will go into remission, and tattooing seems like such an admission that I'm going to be this way the rest of my life.

    And Joann, at this point, I can't fathom it and am not comfortable with it, nor do I feel safe with it. I still feel violated and horrible, I still want to hide and it takes every ounce of courage I have no to feel violated, horrible and want to hide.

    Funny - or not so funny - I thought when I lost my hair again in January that I woudl face this hissing cobra with my own eyes blazing, just daring it to strike.

    Truth time - I lost the battle - but I'm still fighting.

    Hugs back to you!

    Terese AKA Gorgi
  6. MERK2

    MERK2 Guest


    I just read your post and PLEASE remember that you are a WORTHY person ----- WORTHY of LOVE, FRIENDSHIP, ACCEPTANCE, RESPECT and more importantly SELF-RESPECT and no one but YOU can take this away from you.

    When this happened to me as suddenly as it did I refused to hide myself as I felt I was STILL ME only minus every hair I had ever had. I SMILED when I was ABSOLUTELY DYING INSIDE but I FORCED myself to carry on. This was the BEST thing I could ever have done for myself. As a result I have used the mantra THINK POSITIVE / ACT POSITIVE / BE POSITIVE and believe me it works I am living proof of this.

    I have come to the conclusion that if you act as NORMAL as if there was nothing wrong --- people will treat you NORMALLY if you act the VICTIM and hide yourself and avoid people THEY WILL AVOID YOU LIKE THE PLAGUE because they don't know WHAT to say to you or HOW to say it to you. You CAN and you WILL come through this tragedy of hair loss with your PRIDE and DIGNITY in tact but YOU must start making baby steps by going out and SMILE even if it just about KILLS you to smile. Speak to people the way you did before you lost your hair and you'll see that they will be very receptive to you. YOU are the one who has to take that FIRST and MOST DIFFICULT STEP. Don't think I didn't CRY I CRIED buckets but in the privacy of my own home. I told people only when I was ready to and it wasn't everyone I told --- I'm almost sure that everyone in our SMALL TWON now knows that I have no hair and am wearing a wig and I can tell by the way they look at me that they are trying to confirm this for themselves but I just carry on even if they're looking at the top of my head and not my eyes. They soon focus on speaking to me and not my hair.

    Having my eyebrows and eyeliner tatooed was the best thing I have done for myself since this happened. It sure freed time in the morning when I didn't have to draw on eyebrows and put eyeliner on so that it didn't look satanic or to gothic ---- I think I did O.K. but I was always very self concious of the fact they were drawn on ---- NOW hey nobody takes a second look. It's AWESOME. The eyebrows were a cinch to get but the eyeliner was a bit sensitive ---- I've had worse pain in the middle of the night when I wake up and my arthritis in my left knee is acting up buttttttttttt everyones pain tolerance is different.


    Walking with you in SPIRIT.
  7. redclaire

    redclaire Guest

    Merk is one of the first ladies I met here and really did set me straight. And now... looking at a picture of her.... Merk, you look SO familiar to me. I can't put my finger on it. Of course I used to work at a theater so I would see lots of season ticket holders on a regular basis.
    You look just like I imagined you- beautiful and kind.
  8. MERK2

    MERK2 Guest


    Thank you for the compliment.

    Are you Canadian? Where did you work in a Theater because as a teenager I also worked in a theater in a town in Northwestern Quebec --- now how coincidental is that? I worked in the Ticket Office all through High School. I saw lots of free shows.

    Walking with you in SPIRIT.
  9. redclaire

    redclaire Guest

    Nope, I live in California.
    I was fortunate to attend one of the FAME schools ( remember when we used to have funding for such fabulous places of learning?). Through college I worked as a server in our ( at the time) local dinner theater. I also worked in the box office, then the business office and my last job was house managing the local black box theater.
    I've gotten to see a lot of free shows too! Inclusive of a few "big" productions that roled through and offered us tickets.
    My husband still designs lights for both the Dinner theater ( musical) and the smaller theater and he's THE tech man at our local high school's theater building.
  10. MERK2

    MERK2 Guest


    I'm sure we have never met then. As you know they say everyone has a twin somewhere maybeeeeeeeeeeeeee you saw mine. (He! He!)

    Lucky you to be so talented as to be able to attend one of the FAME schools. Acting was not one of my fortés but I certainly ACED in the acting department after I lost my hair because I always smiled even though I was DYING inside and now I smile because I want to I DON'T have to fake it anymore ---- I haven't for a long time but at the beginning it was PAINFUL to SMILE but I just forged on and it was the VERY BEST THING I could have done for myself.

    Walking with you in SPIRIT.
  11. redclaire

    redclaire Guest

    At acting! Oh gosh no! I was a techie, baby, all the way! LMAO!!! Built sets, hung lights, ran sound boards, etc. and so on.
    Wore cut offs and t shirts and birkenstocks and LIVED for getting into the grime with the boys!... I think the neatest thing I ever heard in highschool was " Wow, you clean up good". And that was at prom.
  12. MERK2

    MERK2 Guest


    Now Pray Tell what would a play be without the Techies ---- Their work can make or break the productions.

    KUDOS to you girl.

    Walking with you in SPIRIT.
  13. redclaire

    redclaire Guest

    LOL! thanks. I have to admit, I was very fortunate to be able to go to school there. By the time I had started it had moved from a FAME school into the Magnet catagorie, but still the same sort of idea.
    I remember watching FAME and thinking " That's gonna be ME". Ok, not quite... but I still had a fabulous time and it probably saved my highschool career, as I had to keep my grades up and I was so easily bored by school.

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