Blog · October 29, 2012

EB Awareness Week 2012

I always found it ironic that the last day of EB Awareness Week falls on Halloween Day. After all, for many EB Children and Adults, being covered in gauze is a daily routine, not a once-a-year costume. I further wish I could say that I liked Mummy costumes or that I would ever dress myself or any my sons like that, including my son with EB, but I often felt a bit uneasy about it. No thanks. I hate gauze. Really, I mean it, I HATE gauze.

Gauze to me, and more so to my son, represents that thing that we have to cover wounds with. Those nasty, painful, bloody wounds that make my son’s life miserable. They represent what we hate the most about the condition, the time we have to spend unwrapping, medicate and rewrap every single day of our lives. We can never get away from it, never take a break. Gauze is there, always there. There to protect the wounds, the pain, the blood.

Yes, the wounds, the pain, the blood, that’s the reason the ribbon for EB is “red”. I had someone recently asking me if the ‘Red Ribbon’ was the official ribbon for EB. That is a hard question for me to answer. The official answer is “No”. But for me, for me personally, the answer is “Yes”, a resounding YES! And here’s how it all started…

I had a good friend that had a website for the baby that she lost back in the late 1990s and one day she posted a ribbon that represented her daughter’s condition on her website with a link to it that went to explain more about the disorder that took her life. I really liked the idea of a ribbon but had never seen a ribbon for EB before, so I went on a search for it. After days and days of searching I came up empty handed, what I did find however, was a website where you could make a ribbon to post on a website for awareness, so as I was browsing through the other conditions I ran across a kind of red that the website referred to as ‘tomato’ and it was the exact same color as Nicky’s wounds, not the fresh ones, but the ones that were healing. I simply could not get that color out of my head.

The Original Ribbon

Let’s be clear here: it’s not like I was creating a color or was doing anything in any way official. Each and every color imaginable and even many combinations of colors were already taken and most colors symbolized many different conditions. I even noticed that two or more color ribbons represented the same condition; hence I didn’t feel like I was inventing the wheel by any stretch of the imagination. Since I was picking this color just for ‘ website, I didn’t sit there and think about it a whole lot, but I felt that no other color could represent EB better than red for wounds, blood and pain. I put the ribbon up on my website and forgot all about it.

It wasn’t until a few years later, in the early 2000s that I noticed that every website that listed ribbon colors and what condition they represented, listed Epidermolysis Bullosa under red; and it wasn’t just one website, it was hundreds! It was literally all over the internet, even wikipedia had EB listed under red (check it out!). I felt proud because the words ‘Epidermolysis Bullosa’ were uttered, some awareness was spreading and it was just an amazing feeling knowing I was responsible for it. Yeah!

One would think this was an important awareness tool and even a mild level of achievement, but nobody seemed to care, and some people were not even happy about it. Imagine that. While most people were just upset about the color choice, a color that is mostly associated with AIDS (although is also used for Substance Abuse, MADD, Heart Disease and others), they were afraid that people might think EB could be “caught” like AIDS. One person in particular went absolutely over the top and even lied to everyone for a reason that is yet unknown to me. He started by sending a long fact-filled email to all the EB email groups about the history of the red ribbon for AIDS to prove his point of what a horrid color choice red was, as if it was my fault that my little ribbon spread like wildfire over the internet without even me knowing about it, and proceeded in announcing that both the EBMRF and DebRA were planning a new ribbon color to be announced soon for EB Awareness week.

Privy to this information, I then contacted both these organizations’ presidents who explicitly told me they had no plans of using any ribbon of any kind (and 7 years later, they still haven’t), and Lynn of the EBMRF even told me that she liked red for EB and if they were going to use a ribbon, it would most certainly be red! A couple of years later, in a video sponsored by DebRA, several Doctors wore a red ribbon lapel pin on their collar while speaking about the condition. Yes, I was proud.

I still like and stand by my choice. A ribbon that is white would not symbolize the pain, a ribbon that is gold would not symbolize the wounds and a ribbon that is blue would not symbolize the blood, only red accomplishes this in one big swoop. Whether that is the ‘official’ ribbon color for EB, I will leave it up to anyone’s interpretation, but it will still remain the official ribbon color for EB Info World website, I will never change it, but anyone is free to use whatever color of the rainbow they please.

I wanted to take a moment to say THANK YOU to the Global Genes Facebook Page which featured this above photo of Nicky to spread awareness for EB! They were not even aware that it was EB Awareness week… I guess there are no coincidences in life! With nearly 1000 likes and over 300 shares as I type this, I could not be more proud of my sweet boy. Oh yes, someone wondered ‘who’ Sleeping Angel’ photography is. That is ME! Mommy! Ha Ha. My Sleeping Angel Photography website is here –>>

Love and Blessings,