Alopecia World
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My story
I honestly had never heard about Alopecia and would never have expected this would happen to me. I am hoping that by putting some of this into words it might help me a little to deal with it. I am married and have 2 children and a great support system but of course no one knows what this is like and although they try it has been very hard for me. I am a strong person, always have been the rock in my family. I tend to hold things in and I know thats not good for me but its something I have done my whole life and is a hard habit to break. Maybe putting it into writing will help me get it off my shoulders and out of my mind. It all started on Sunday 9/26, my scalp felt really really itchy, although this has never happened to me before I have had excema, dry skin, psoriasis issues for a few years so, I really did not think too too much about it, I live in New England...its fall and usually I begin to have issues in the fall so thats what I thought it was. Monday my scalp was still very itchy so I had my husband check it out for me, he didn't see anything abnormal and thought maybe I was freaking myself out. Tuesday night still itchy so I thought I would do a home scalp moisturizing treatment and this is when I noticed a half dollar sized patch of hair missing on the right side of my head. My hair is long, I do lose some hair but did not notice any unusual amount like this. I care about my appearance, I am a professional and take pride in my looks. I spend 20+ minutes doing my hair before work every morning how could I have missed this ? Obviously I was freaked out and called my Dr's office for an appointment on 9/29 and went to the lab for some bloodwork. I have under active Thyroid so I was thinking my medication dosage might be off and that was what was causing this even though it has never happened before. Well my bloodwork came back ok so that ruled that out as the cause and my Dr referred me to a dermatologist, she did offer that it was possibly Alopecia or Psoriasis and set me up with my appointment. Of course I googled both and pretty much knew before the derm appointment that this was not Psoriasis but waited for confirmation. Before I made it to the derm appt on 10/6 two more bald spots showed up and my hair keeps falling out at a rapid pace. Finally the appointment day arrives and the derm confirms that it is Alopecia, he asked a lot of questions about stress to which I feel like and had no more than any other normal person until this started happening, I mean nothing significant has happened in my life other than normal day to day stressors. At this point am I stressed well yes every day I am losing little pieces of myself, my hair is everywhere but on my head and I am really freaked out. I know this is not life or death and I keep telling myself that but its still upsetting. He tells me not to worry, that everything will be ok (although I don't see how) gives me cream to put on and sends me on my way. I am trying at this point to remain positive that this will help but every day more and more hair falls out, I now have several bald spots on my head and it doesnt appear to be slowing down at all. I went to my hairdresser last Saturday and had a complete meltdown, I really felt bad for her that she had to deal with me in that condition but I guess that was a breaking point for me. I had her cut my hair (for what might be the last time for a while....if ever) and walked out of there feeling pretty down. I hate the way my hair looks but I'm thinking maybe less stress on my hair will help, couldn't hurt right ? Well its now been 5 days since then and I am still losing my hair at a rapid rate, I have so many bare spots at this point I'm not even sure what to. Fortunately for now I have been performing a Donald Trump act with whats left to cover up as much as I can but see that this is not going to be a possibility soon. I mean what is best ? Wait it out ? Be done with it and shave it all off ? Its sooo depressing and I don't know how to get over this. I made an appointment today with a Wig specialist, maybe this will help, I just don't know. I am feeling pretty down. I work in a large call center managing 20 sales associates and have been having a really hard time performing my daily functions with this constantly on my mind and I don't want them to see me like this. If anyone has any ideas, suggestions, words of wisdom please feel free to share as I am open to anything at this point.
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Comment by Sarah Eisenhardt on October 14, 2010 at 11:38am
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I hate when the doc. says stress! but thats my personal opinion!
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Comment by ChaNN on October 14, 2010 at 10:13pm
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YEAH I FEEL THE SAME WAY KELLY !! I HAVE 2 KIDS THEY SAY ITS STRESS BUT HOW CAN YOU NOT STRESS I WHEN YOUR HAIR IS COMMING OUT EVERYDAY . I FREAK OUT EVERY DAY CAUSE I KNOW IF I KEEP LOSING HAIR THAT I CAN'T COVER ANY MORE SPOTS . I GUESS MY HAIR LOSS IS AT A SLOWER RATE I THINK EVERY ONE IS DIFFERENT
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Comment by Kathy D. on October 14, 2010 at 10:24pm
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You're right Kelly it's not the difference between life and death but it's still very tramatic and only those of us who live it understand. It's been 16 years and it still affects my life every day. I am a Human Resources Director and I even though it's a smaller company I still want to look my best and I wear wigs so I feel like EVERYONE is looking at me and thinking "she's wearing a wig" when in fact most of them don't have a clue. I don't have any real words of wisdom but at least you have found this site and have support here. I had my head so buried in my own pity that I didn't even search for support until a few months ago. Finally people who understand and we're not alone. Wishing you well!!
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Comment by letcia Parga on October 15, 2010 at 3:00am
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Hi , my story is very similar to yours , I basicly lost a chunk of hair overnight without notice . One day I flat ironed it and the next day I went to iorn it again and then that when I noticed a bald spot right on the top of my had . I ddint see a doc fo r about a month . They asked me abunch of questions and did blood work . Everything came back normal so my doc told me i had alopecia . I was so sad and depressed that on some days I couldnt go to work . I think the shotscare working cause i still only have one spot but it's pretty big and on some days if a lot of hair falls out then I know its gonna be a down day . I had to get medicine from the anxiety i was having from all of this especially since I have to work with the pubic at a cash register . I know no one could see it , I knew it was there and that was the only thing on my mind . I go back to see my dr tomarrow so we'll see what she says about my progress towards hair regrowth . I think sh'll give me another shot . My advice is to take everythig day by day and hopefully I get to regrow my hair amd live past this like it was alla bad dream . I'm sorry that this happened to you cause this had left me the most depressed person and no one around me undersatnds how this really affects me . Pray pray pray !! (jesus loved you before he knew what you looked like )
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Comment by Lisa Santer on October 15, 2010 at 8:04am
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Hi Kelly! When it's falling fast it's hard not to be preoccupied with HAIR. Each time mine fell, I was constantly checking myself in every reflective surface and battling the urge to touch check if a spot were showing. At first I found some relief with a wig. Eventually I learned my true relief comes with shaving, sooner rather than later to cut short that painful preoccupied period. My truth is that my scalp is not the center of the universe; people stare way less than I imagined; if I'm relaxed they usually are too; and bald turned out to be a good look for me.
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Comment by margaret staib on October 15, 2010 at 10:26am
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We are no more stressed than the average mother with two or more plus kids. If it was stress all my friends would be bald!!! I have friends that stress out much more about parenting. I am a mom that does not send my kids to camp for I love being with my kids. They do not stress me out. So the next time someone tells you its stress because of your hair tell them right in their eye.....they don't know what causes this or cures this, that's why there is still research going on. and walk away with your head held high.
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Comment by Kelly Hamel on October 15, 2010 at 12:10pm
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Thank you all so much for your comments and words of encouragement. I think it really does help to hear other stories and hope there is a light at the end of the tunnel whatever that may be. I made an appointment for a wig consultation yesterday and I am hoping that it will go well. I am so up and down every day, moment to moment and just trying hard to stay sane. Its not going to be easy I know that but thankfully I do have family and friends with me no matter what
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DOM Said "Stress? Show me the Alopecia outbreaks in concentration camps or slaves living in appalling conditions or Chilean miners underground. It's just an auto immune condition that can start at any time. .."
I could not have said it better!!!! But now I am going to quote you everytime I here someone tell me that my little boy is stressed out!
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Comment by Pat Latina on October 15, 2010 at 6:54pm
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Hi Kelly, I totally understand the rapid shedding of hair. It happens so fast, I always use to think that if I never noticed and went to the Dr it would not have happen so rapidly. You know, like if you don't know it's there you don't pay it any mind. But we all know that's a lie cause Alopecia has a mind of its own. One minute I was thinning and the next few days I was balding and then like lighting I was completely bald. Many of us here have similiar story but all of us understand what you're going through. The wig specialist will give you options and that is great. I wasn't so smart when it happened to me and I defintely didn't have AlopeciaWorld. So go to your appointment, take the option that best suits you for now and know that it might not be a permanent decision but one that helps you through. Let us know what happens, we are all here for you. ((((Hugs))))
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Comment by Marisa on October 15, 2010 at 11:25pm
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I so hate hearing that too...STRESS HAS CAUSED THIS...you did it to yourself because you go t so stressed out....well bs...if that were the case 95% of the world would be bald dont cha think!!!! Seems to me that a whole lotta people a stressed out...so puuuyyyy on that...just know one thing ...you will get thru this...and this is a great site for info, laughter and support..Blessings!!!
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