Now, just to clarify, I have what I consider to be a fairly mild case of ED. Yes, by looking at me you'll notice my glasses and my retainers, but other than that, more often then not no one would suspect that I have a genetic disorder. After all, lots of teenagers around my age have braces or retainers and tons of people wear glasses. Those two things combined aren't really enough to set me apart from anyone else. But every once and a while when my skin flushes in a certain spot or a certain way it can look like I have a weird kind of rash. I can't really describe it, but by some it is called the "marble cake skin disease," if that gives you an idea. Anyway, there was one day in particular this summer that reminded me exactly how I am different. I was a couple of hours into a six hour shift at work, chatting with the girl who was working with me that day. This was my third year working with her and she is a really sweet young woman. Well, we were just chatting away, having a couple of laughs when she asks me what is wrong with my leg. Hearing this, the first thought that ran through my head was that I had a cut and was bleeding or something (I have a habit of not feeling cuts and scrapes). So I look down, expecting to see my sock stained red and nothing. It was just my leg, looking completely normal in my eyes. I guess she saw different because she kept insisting, and for whatever reason that really stuck with me the rest of the summer. Even now it kind of gets to me. I wasn't teased an enormous amount because of my disorder when I was little. I mean, children called me a vampire when I was younger because of all of my pointed teeth, but once I got braces and false teeth, I looked just like everyone else. For a while, I forgot I was different. But it only takes one little comment to pull your memory back right in front of you.
That one little comment really made me realize how much my mom has helped me throughout the years. Her understanding, her kind heart, her acceptance has been such a huge part in the foundation of my life that I really take it for granted sometimes. But this one little comment made me realize something else as well. My mom understands everything that I have been through and supports me with every step I take. She's been there to explain my own medical history to me, help me sort through treatment plans and doctors, and to help me look further into my own disorder when I wanted more information. This is all great, but there is so much that neither she nor I know, so much that neither of us, nor my doctors, can explain simply because none of us are experts on the subject. So this summer, I decided that I wanted to extend my knowledge of myself by reaching out to others who have gone through the same things I have. I finally built up the courage to email an NFED liaison about being introduced to other families. I figured if having one person who understands my symptoms is comforting and relieving, then why not try and reach out to a group of people who can understand better than anyone else what I am going through on a day to day basis? I'm not quite sure why it took me this long to try and reach out. I've known about NFED for a really long time. I've seen the conference videos, read the news articles, and gone over the family stories countless times, halfway wishing that I could get to know this group of people and halfway thinking that, for whatever reason, I wouldn't belong. Well, now I have reached out, and even thought I have just scratched the surface as far as getting to know these people, I wish I hadn't waited so long to do so. It's a really crazy feeling, after going through nearly two decades of life feeling like my mom was the only one who really understood, to find this all these great people who have shared the same troubles and worries. Now, I'm really just wondering what's going to come next. One this is for sure though, I won't be taking my family for granted anymore, and I won't take this opportunity to connect and to learn from others for granted either.