Well hello my blog peeps! Its been too long since my last blog post, my apologies for that. Life has a twisted way of inserting unplanned chaos, but here I am at 1:30 in the wee morning to chat with you.
First off, hope all is well with you guys. I can’t believe that its almost Halloween, which as you know is my favorite time of the year. Its kicks off the holiday season with tricks and treats. A day to be whom ever you want, were the weird and freaky are bumped up to crazy levels. A crisp chill is in the air and the hauntingly sweet smells of pumpkin spice is everywhere. Another reason why I love this time of the year is because every year from Oct 25th – Oct 31st is EB Awareness week. 7 days were eye opening information and heart felt stories are shared across all media outlets.
People from around the world sharing their own experiences or advocating for their loved ones. I’m going to shine the spotlight with some facts about this very rare disorder. Here we go…..
#1) EB stands for Epidermolysis Bullosa. Say that ten times fast 😉
#2) 1 out of every 50,000 are born with EB.
#3) EB is a Hereditary disorder, it is NOT Contagious.
#4) There are three main types of EB; Simplex, Recesive, & Dystrophic. There are, however, twenty-six sub-types. So there is quite a wide range on how simple or complicated ones case is. No two are exactly alike.
#5) Most born with EB don’t live past the age of 14 and those blessed enough to out live that statistic and enter adulthood wont live past the age of 25. Now these are just statistics, but too often are they proven.
These are just a few simple facts about EB. There are so many informative websites that educate about EB on a more extensive level. Such as….
Please take a moment and check them out.
I have lived with EB for 31 years now, well almost. I have a couple more days before I officially hit that mark. Its been a rollercoaster of a life so far. But, its been a pretty well balanced life i’d say. ups and downs, left turns and right turns, stars shining bright and pitch black darkness. There are many days of breathing in the warm sunny breeze and a few times where I need to take a step back and learn to breathe again. But you wont hear any complaints from me, because I love my life. I wouldn’t change a memory from my past and I’m stoked to see how my future pieces itself together.
Throughout my life I have been labeled as Disabled. Ok, fine, go ahead and label me that, but before you do take a moment, look in the mirror and slap that label across your own forehead. Light bulb!… we are all disabled. Yeah, I said it. Look up the definition of Disability…
Disability = a physical, mental or emotional condition that limits movement, senses or activities. Synonyms = incapacity, defect, impairment, abnormality.
We all have glitches, that’s how we’re made. You can’t run from it. Now, some of us can hide our disability from the public world and some of us cant. So the next time you see someone whos glitch is front and center , smile as you walk past them because I know that that’s what you would want in return if the situation was *360.
We all walk different paths in life, however, in a very strange yet beautiful cosmic way, we’re all connected. That connection? We’re all human. Oh look, another light bulb 😉
To paraphrase my favorite rapper…. “I don’t care if you’re black, white, straight, bisexual, gay, lesbian, short, tall, fat, skinny, rich, poor or what disability you have… if you’re nice to me i’ll be nice to you. Simple as that.”
A couple of finishing touches to this blog *I have uploaded a video on my Facebook page about EB. Click on over and check it out. 🙂 http://www.facebook.com/hazeleyes1984
*My friend Monsie, who is a fellow EB fighter, has a blog here on WordPress as well and she has also posted a blog about EB. Her blog darts the bullseye on a more personal level. Its a fantastic read! Click on over to her blog, Shesdigital . like and share :). http://www.shesdigital.com
Thank you in advance and as always thanks for following my blog. I hope you have a fab rest of the night or morning, depending on where you reside. I’m off to hopefully catch a few zzzz’s before the sun rises and I get ready for the day. Starting my Friday by taking my mom out to breakfast and then a lil shopping. Not a bad way to kick off the weekend if you ask me 🙂
Until next blog….. Love Derra <3. Happy Halloween!!!! Boo!! 😉