Well I have tried to avoid being open about my disease because I am so ashamed of it. But then I decided today to do a google search for alopecia and stumbled across this website and decided to join. I can't find a pyschiatrist that is seeing new patients so I guess this will have to do for now because I am going insane. I think I just need to write and get all the horrible things spinning through my head out "on paper".

I first discovered what my dermatologist at the time called "a patch" in junior year of high school. I was 17 and in a very intense academic program called International Baccaleureate (IB for short). I was being pressured by my parents to be active in sports (track and cross country), marching band, German club, and numerous other clubs and honor societies. I guess the stress wore me down because one day I was inspecting my ponytail in the mirror and discovered a dime-sized bald spot. It totally freaked me out. I thought maybe I just brushed my hair too hard or something, but mom insisted we see the derm. He said it's probably nothing, just a patch from stress, and sent me on my merry way. The patch grew in and for the next six years of my life I never thought about it again. I had long, beautiful, straight blond hair (natural) that anyone would kill for. I had long dark eyelashes and perfectly arched light brown eyebrows. I was always very self conscious with my weight and other things but my hair was the one thing I thought God decided to give me that was beautiful.

I moved to a suburb of DC in December 2007, shortly after graduated from college at Virginia Tech with a degree in accounting. It had been a crazy awful year, with the April 16th shooting (I lost a sorority sister and a fellow Resident Advisor to the tragedy), then contracting strep following by mono in the summer, and deciding to transfer my full time offer with a prestigious Big Four accounting firm from Richmond to DC (my serious boyfriend of 5 years was living in DC and I decided to move up here for him). My first two weeks at the job were the first 2 weeks of January, right after new year's. I was in training in Week Two when I noticed my hair line, where my bangs were, was really greasy one day. I re-washed my hair and dried it but it still looked odd. I decided to put a headband in and figure it out later. Well by the end of the week I noticed that my hair looked thinner around my hair line. I didn't understand what was happening but because nothing more happened--i.e. it jsut got thin around my hairline--I ignored it. By the summer the hair had grown back and I got it cut shorter to match the shorter pieces growing in (FYI my hair grows infinitely, ridiculously, slow). I thought my issue was over but by Thanksgiving 2008, things had taken a turn for the worse.

My girl friends and I decided to go out one night and one of them was styling my hair when she took me to th ebathroom and said "I dont want to say anything in front of everyone but, it seems like you have some places where your hair is not there". I simply nodded, had her hide the spots with big curls, and we went out and I tried to have a good time anyway. But I was worried.

By Christmas, it was getting to be that I would shower and clumps were coming out. I had to buy Drano multiple times to unclog my drain. I cried the entire time I was pouring the shit down my tub drain. I cried when I would pull clumps of hair out of my hairbrush. I'm crying as I write this--it's ridiculous.

My boyfriend was seriously concerned, and he begged me to see a dermatologist. I finally took the step and made an appointment during Christmas week. She told me she would refer me to this university hospital center in DC who had a great treatment program for alopecia -- something about light technology would grow my hair back...who knows. So I trekked out to a terrible part of town to go to this shady hospital and the guy ended up just referring me back to my normal derm. He said to try rogaine. And if that didn't help, to come back. Seriously? What a waste of time. I mean by now I had lost about 50% of the hair on my head. So I went back to my derm (this was about 2 years ago to put it into perspective). She prescribed oral prednizone, Olux foam, and said eventually we could do injections of a steroid called Kenalog. I also started taking a multivitamin and Biotin supplements. I also went to my family doctor to get tested for thyroid disease or anemia (both came back negative).

I spent New Years in NYC with my boyfriend and his friend. I had to wipe out her tub after I showered. It was full of my hair. By now, 75% was gone, I had no eyelashes, no eyebrows, and no hair on my entire body--arms, legs, everything was bald...

By the time we got back to DC I knew I needed a wig. I was so completely embarassed and ashamed. My job wouldnt allow me to wear a hat or scarf. I told as few of my coworkers as possible about my disease because I was so embarassed, so then when I came to work with my "new hair"...it was awful. I got questioned by everyone and they all were like di dyou get extensions? And I didn't feel like taling about being bald so I just let them assume.

Well I started on the injections once the prednizone started working and I had peach fuzz everywhere. The timeline gets really fuzzy but it was about 5-6 months or so. That summer I went to the beach with family and there are pictures of me with my supershort hair. So by Christmas 2009 it was to the point where it just looked like I had a nice pixie cut. My hair was growing back everywhere except one stubborn patch at the nape of my neck--who cares? 95% of my hair was back 1 year later. I thanked God and was so grateful. I was using Latisse to grow my lashes and eyebrows (insurance doesnt cover this, of course, pretty much everything associated with this disease is "costmetic" including the high cost of wigs). I was wearing little clips and headbands and mascara and felt great. I went back to work in January 2010 without my wig and shocked everyone with my "new short haircut"--I let that one run wild too, I was too emotionally drained to correct anyone.

Over the next 6 months my hair kept growing! I was so excited and happy. I even threw my very ratty synthetic wig in the trash as a celebration (it is un-wearable anyway). Then in August I noticed a new patch and my lashes falling out again (even though I was still paying $120 every 2 months for Latisse and using it religiously). By late September the hairline under and around my right ear was bald again. It is November and I would say I still have about 85% of my hair, maybe even 90% but thin almost nonexistent lashes and only my left eyebrow is full. I look like a clown unless I apply makeup very carefully.

So the status update is, I am still on prednizone 2 years later, and still getting injections in my scalp--that can't be good for me right? But every time I taper off my hair gets thin again...the price we pay for beauty huh? It's not only that, its my confidence, my self esteem. I feel like with each strand I find in th ebrush, on my hand, in the drain, on the floor, on my tshirts, I lose a part of my happiness. I just want to go back to feeling normal.

I am getting married to the boy I moved to DC for--in June 2011. I just want to have my real hair on my wedding day. I can't fathom the devastation that I would feel if I had to wear a wig on the most important day of my life.

Is it silly of me? Is it shallow? My friends don't understand what I go through. I am obsessed with thoughts of my hair loss. I stand in front of my mirror for 20 minutes every night just inspecting my scalp. I have spent thousands by now on doctor visits, prescriptions, injections, creams, special shampoo (Nioxin, it doesnt work), a wig, and if I can ever get an appointment, seeing a therapist. Which will probabyl come with its own set of drugs.

I can't watch tv, read a magainze, hang out with my friends, without somehow thinking about my hair loss. I watch them doing their hair, complaining about their hair, talking about haircuts, applying mascara--the littlest things in life that I can't enjoy anymore. It has completely consumed me. I am also sick all the time because of essentially destroying my immune system with the prednizone. I have missed a lot of work because of this disease. But in the end I think maybe a cause of the disease is stress--most definitely related to my line of work. It feels like I am trapped in a catch-22 because I know my alopecia flares up with periods of high stress in my life, even if I can't ever know the true cause of the disease, but hair loss stresses me out and then I just end up losing more.

I just feel very ALONE. I have never seen anyone else with alopecia, I have never talked to anyone else. I feel like no one understand what I have gone through. I am terrified of dealing with this for the rest of my life and because it doesn't mean I am sick, no research will ever go into finding a cure--or even a cause--to this disease.

I am depressed, obsessed, anxious, and I have lost interest in things that I used to love, and people who used to make me happy. I am grateful my fiance has stood by my side through everything but he takes it very scientifically--Erin, are you losing your hair again? Ok, you know what to do. Go to the doc, increase your prednizone...but I just want someone to talk to who knows what I am going through.

I feel also like I am a petty person because this disease doesn't mean I am sick, I mean there are peopl elosing their hair because of cancer...I feel I don't have the right to complain about how unfair this is, how unfair life is, because people are battling far worse things. But in those things comes a lot more avenues of support..both mentally and financially. It is a really annoying thing to me to have to say "Well I have alopecia"and have to explain everything because no one knows what it is...it's not fun having a rare disease. Lucky us right?