I am from a small town in Nebraska Population Approx. 7,000+/-. I am 40 years young, a kid at heart. I love to watch sports, both live and on television. I’m an avid Husker fan and Kansas City Royals fan (#4 & #35) are my favorites. I have 2 furbabies, kitties, Calpurnia (Cali) and Boo. To Kill a Mockingbird references. I am currently an advocate for sexual assault and domestic violence survivors. I have my degree in Human Services and plan on using it to advocate for people with Alopecia Areata. At the age of 2, I woke up and my hair was falling out. Within 2 weeks, my hair was all completely gone. My parents were like any parents, freaking out, taking me to different doctors, dermatologists, etc. They say, when you are that young, you don’t remember much. I beg to differ. I remember being poked by needles, held down by 4 nurses and 2 doctors because I was so scared and had no idea what they were doing to me. I was screaming at the top of my lungs. I was crying so hard that I broke the blood vessels in my eyes that day. I remember waking up and seeing chunks of hair on my pillow, but I was 2, so I didn’t think much of it. My mom and dad were just baffled. I ended up in a dermatologist office in Omaha where they told my parents it was Alopecia. They told my parents that I would eventually out-grow it but there was no cure. There were treatments they said, so I underwent cortisone treatment and re-grew my hair. Within 2 weeks of stopping treatment, my hair was completely gone again. The dermatologist told my parents there were other treatments including putting needles in my scalp. That was enough for them to stop. Besides the fact that my parents were not rich, they couldn’t afford to get me “cosmetic” treatments as health insurance wouldn’t cover it. So, that’s how that went. But the time I started school, my parents decided I should have a wig to help prevent the other children from teasing me. I don’t remember getting fitted for it, I don’t remember picking it out, the color, etc. I just remember having to wear it because my parents said so. I hated it. HATED IT. It was hot, itchy, and always fell off in gym class when we were tumbling. Needless to say, the kids realized soon, that I wore a wig. So it didn’t take them long to start the taunting, the pulling off of my wig daily, the pointing, the laughing, etc. Every day after school, I would get into my mom’s truck and pull it off. During summer, I wouldn’t wear it all at. My neighborhood friends knew I didn’t have hair, they didn’t care. All summer, I would go swimming, play softball, ride bikes, etc. all without that wig. But then, when school would start up in the fall, out it would come, the same style and cut, and I would have to wear it all school year. By the time I reached 4th grade, I was so sick of it, that I hid it under my mattress so it wouldn’t be found by my parents during the summer. So when school started for my 4th grade year, “I can’t find it”. My mom finally convinced my dad that if I didn’t want to wear it, I didn’t have to anymore. In my mind, everyone knew anyways and it was an inconvenience to me. So after that decision, I didn’t look back. Well, I thought that since I wasn’t wearing it anymore, the teasing would stop because they all knew anyways, right? Wrong. There were “bullies” that never stopped the taunting and teasing, all the way to high school. Same group of boys. I would get an occasional tease from kids in the other grades as well and it was non-stop all throughout my school years. Sadly, I still get it today by other "adults" my age.

I grew up in the 80’s, where the hair bands ran the music world, the “big hair” was the style and Aqua Net had a fabulous decade. So, when my friends were teasing, spiking and spraying their hair, I was watching from the sidelines. I didn’t fit in, I had no hair to tease 6 inches above my head. Getting ready for school dances was easy for me because all I had to do was find something to wear. I didn’t have to spend hours on my hair and makeup. I rarely wore makeup and rarely wear it today. However, junior high or middle school they call it now, when the hormones are emerging with the new teenager bodies, my friends all had boyfriends, dates, got picked in the kissing games, etc. I did not. I had crushes just like the rest of my friends, but I didn’t have any dates, no boyfriends, no being picked for spin the bottle kisses. I was frustrated, jealous, upset. I didn’t understand why they would be able to have the dates, but I never was asked. They would fight over who was going with who to the dance, while I knew I was going alone. However, I didn’t let that detour me. Summers were the best because I could play softball. Hot, humid, sticky summers with double headers were what I lived for. I loved to get dirty, to come home and be covered in mud, sweat and dirt from the field. While my friends wanted to spend time in their bikini’s at the pool, I wanted to be on the field. But, I did like to swim too. I never learned how to “properly” swim until much later in life and to this day, I wouldn’t consider myself a good swimmer. I’ve always been athletic though. I ran track, long jumped, high jumped, played basketball, but nothing had the most thrill to me then softball. I guess it was my “release” from the teasing and taunting because there, I could play. I was happy, I was a good player. I loved the game. I still do.

Graduation day came and I got all ready to do the “walk”. My cap wouldn’t stay on and of course, I didn’t have hair to clip it to. Little things like that were frustrating growing up, and are still frustrating. I graduated college in 2015 and we had an indoor commencement so I didn’t have to worry about wind and my cap actually fit! I have learned a few things throughout the years, with getting things to stay on my head when I would wear something. My best friend’s mom was diagnosed with breast cancer and she lost all of her hair. She had a couple of different wigs she wore. One day I was over at their house and Sherri (friend’s mom) asked if she could “dress me up” to see how I would look. It was fall, not a lot going on in our sleepy little small town so I said sure. She had a blast. She put one of her wigs on me, completely did my makeup (I had no idea how as I never wore the stuff), she styled the wig, dressed me up in some of her clothes and sent me on my way. She showed me how to get the wig to stay on with double sided sticky tape. Worked great and did not hurt when peeling off. So, I drove to the place that I worked at, a small grocery store, and walked in. Not 1 person knew who I was. Not 1. I was nervous and I didn’t know why. I felt like I was doing something wrong. Eventually, I started laughing and a couple of the workers realized who I was and couldn’t stop staring with disbelief. So, then I went to my aunt’s house. I pulled up outside, went up to the door, knocked 3 times and walked in as I usually did. My aunt and cousin were sitting in the living room when I walked in. My aunt had a look on her face that was nothing less than fear and shock. My cousin had her back to me so all she could see was her mother’s face. She kept asking who it was. My aunts face was white. (Inside I was dying with laughter). My other cousin then came downstairs and just dropped to the floor in laughter. She cheated by looking out the window and knew my car. My stone face finally cracked and I lost it. My cousin was laughing so hard she couldn’t breathe but managed to squeak out my name. My aunt and other cousin just started in shock. They had no idea who I was and who just came walking in their house like they owned it. My aunt finally said “I, at first, thought you were your mom, but the harder I looked, I knew you weren’t her, but I had no idea who you were, I was so confused!” They all preceded to laugh and to say how beautiful I looked and kept asking me what prompted the random change. I did have fun that night, but I couldn’t make myself do it every day. It wasn’t me. I didn’t feel right and like I said, I felt like I was doing something wrong. This was somewhere in the late teenage years, after high school if I recall.

I didn’t know how to feel about the reactions I had received that night. I got the reactions I so desperately wanted growing up, the looks from the guys, the compliments, the acceptance. But, it wasn’t me. So, I went on like I always did, wigless and without makeup. I became depressed. My parents divorced when I was 12 and my dad moved several hours away. My mother started dating a man that I despised until the day he died. He treated me like the “red-headed step child” and never showed me any respect for anything I did. But, I don’t want to get into that and anything with him, but it showed that even as an adult, I was mistreated. I thought then when I escaped high school, I would escape the teasing, the stares, etc. but I was wrong. In my small town, I was treated by most of the adults, like I was growing up. I was being teased, whispers behind my back, finger pointing, laughed at, etc. So, my self-esteem continuously took hits and eventually, I didn’t care anymore. I fought back with words, became very angry with life, became depressed. I had nobody around here to talk to because nobody had what I have. I didn’t think of support groups back then, this was a fairly new disorder and most people were focusing on cancer walks, the AIDS epidemic, etc. Today, there are more and more support groups popping up. But, I’ve lived with this for 38 years. I’m not seeing many changes. When I apply for employment, I can usually tell if I have a chance or not, within the first few seconds of me entering the room. The way the interviewers look at me, usually tells me if I have an actual chance. When I send in resume’s, they don’t see me, they see my education and experience. They call me on what they read, not by what they see. When I walk into an interview, the interviewer will either welcome me warmly with an open mind, or they will introduce themselves, rattle through the questions and get me out as soon as possible. The look on their face when I walk in, says it all. It doesn’t matter that I graduated from college Cum Laude. It doesn’t matter how long I’ve had experience. What matters to them, is how I look. Is that fair? Nope. Discriminatory. But, how can I prove something like that? I know I’m not the only one that deals with this.

I’m now 40 years old and sometime last year, I decided I wanted to reach out to other adults like me. So I went to the National Alopecia Areata Foundation website and found a phone number for a support group. Since I’m from small town Nebraska, the nearest person was about an hour away. But, I called anyways. The gentleman that I spoke to was very friendly. We spoke for over an hour and I felt so good after talking to him. It was a life changing phone call. He has encouraged me to attend the national conference this year. I don’t make a lot of money at my job, so I didn’t know how I was going to get to Washington DC from here. Well I chatted with a high school class mate one night and she told me to start a fundraiser like “Gofundme”. Well. I have always been one to help others out and not ask for help myself, so that was a hard decision to make. But after swallowing my pride, I created the account and set my goal for $3,000. I made the goal thanks to former classmates, friends, family and social media. So that brings me to today. Having this life, growing up living with Alopecia, searching for support, comfort, understanding and people like me, I’ve made new friends, but we all have similar feelings. Which brought me to my idea after searching for answers online. Hopefully, I can get past my pride and start fundraising for my project. I’m frustrated and confused, but at the same time, I’m driven and determined. My life has been anything but easy but I know there are others that feel the same frustration as myself. So now, I’m on a mission.

After living with this condition for 38 of 40 years, I don’t know why, but I decided I was tired of having nothing to look forward too because of all the disappointments in the past. I have a brain that works, I’m educated, I have thoughts, ideas, feelings, emotions, and downfalls, just like everyone else, yet I’m disrespected, discriminated against and sometimes treated badly, all because I don’t have hair. Sure there are camps out there for people with Alopecia, but all are for children or parents of children with this disorder. But, what about those who are adult that get it? What about us? We need emotional support, self-esteem building, the overall feeling of knowing there are others going through what we are. This disorder doesn’t discriminate, it affects all races, sexes, ages and cultures. People I’ve spoken to, that got it later in life, have said it’s like a culture shock. They try to hide it with hats, wigs, hair pieces, turbans, and scarfs. Some even go extreme and have hair implants. I want this to change. Not only for myself, but for other adults that are struggling as well. Your hair is there for a reason, it protects your scalp from the sun and regulates your body temperature. You have hair in your nose to help catch bacteria from entering your body through breathing. Your hair in your ears protects objects and bacteria from entering your eardrum and causing damage. The best way to describe losing your hair as an adult is like you lost a limb that you always thought would be there. As a young child, I grew up without it, but I do remember having it. So I do feel that loss. This is my motivation to help other adults coping with Alopecia.