Monday, April 14, 2014

My Alopecia History and an Introduction
Growing up, I had always had full, thick hair. I still remember, it was my second ballet recital when I was 4 or 5 years old; the dance was to Jack & Jill, and I was a "Jill", which I was thrilled about because I didn't want to pretend to be a boy. All of the Jills were supposed to wear their hair in buns. As we were getting dressed backstage, I was sitting in my pretty red dress, and my mom tried to put my hair in a bun but my hair was long and so thick that the bun wouldn't stay put. I vividly remember other moms trying their hand at tying my hair but to no avail. Finally, the teacher came over and after trying to tie my hair herself, declared that I would be the only Jill with a ponytail. That's how thick my hair was. Who knew that several years later, my thick hair would be nothing but a distant memory.

I started losing my hair when I was in the 5th grade. I didn't even notice because the first patch appeared on the back of my head. It was actually a friend of mine, Morgan, who pointed it out. I can't remember if I went home and told my mother or if she spotted it herself, but I remember her fussing over it when I didn't think it was a big deal. Out of sight, out of mind, I suppose. Then more patches started to pop up, and I remember my mom bringing me in to see the local dermatologist who told us that I likely had alopecia areata and that there was no known cure. I continued to go to school as is, but apparently the patches were becoming more visible. I recall going to the school nurse at some point that year because I was feeling ill, and as I was waiting by the nurse's desk, my file was sitting there, open, and there was a note that my 5th grade teacher had seen the bald spots on my head and that the school should be on the lookout for any other signs of physical abuse. It didn't mean much to me, but when I told my mother about it that night, she was upset.

I can't remember whether or not we did much, but eventually my hair grew back. A couple of years later when I was in junior high school, the alopecia returned. This time my hair was falling out at a rapid pace, and covering the spots with strategic hairstyles wasn't cutting it. Just before spring break of 7th grade, my mom took me to a local wig shop and we picked up a Cleopatra-type wig. We decided that I would return to school after spring break with my new 'do. I remember we went to Disney World over break and I wore my new wig. I wasn't quite comfortable wearing it in public as it felt so unnatural to me but I thought testing it out in a city where I knew no one would be a good opportunity for me to become more accustomed to wearing it. Imagine the horror I felt when we ran into family friends at Disney World! I went back to school with my wig, and while some people were kind enough to say nice things, I'm sure there was lots of snickering behind my back. Over the years my mom took me to numerous dermatologists who specialized in Alopecia but they all said the same thing: no cure. I tried Rogaine, steroid creams, but we stopped at injections. We also found better wigs for me to wear, and life with a wig became the norm for me. But outside of my immediate family (my parents and my younger brother), I never discussed Alopecia. If people asked me, I would tell them I had gotten a really bad sunburn that caused my hair to fall out.

So why did I start this blog? For several reasons!
- I want to be able to connect with others who have gone through similar situations.
- I want those closest to me (including my daughter, when she's able to read!) to know how alopecia has really affected my life.
- I am planning to start a gluten-free diet soon, in hopes of regrowth, and figure a blog is a good way to chronicle this journey.

About me? I'm 33 years old, a mom to a beautiful toddler and a wife to the love of my life. My head is completely bald, and postpartum, after nearly 80% regrowth, I lost all of it and then some. I lost my eyebrows and eyelashes. In fact, the only part of me that has hair is my private area! Go figure, the only place on my body people don't see. But I'm ready to share my story and experience with others. I'll remain anonymous for now but maybe as I become more comfortable, I will introduce the real life me :D Please feel free to say hello, I'm looking forward to connecting with you!