Blog · December 27, 2014

The Importance of EB Awareness

eu4ppA quick post today-I made this graphic for my website and Facebook page as part of a bunch of Memes I did one day earlier this month and this particular one is probably the best one I’ve made, which explains fully why Awareness for Epidermolysis Bullosa is so important.

I remember vividly one day over 10 years ago (probably more like 12 or 13) driving to Children Hospital Los Angeles to see a particular Doctor/Dermatologist for Nicky who, I was told, was at least ‘familiar’ with EB. Nicky had some issues, I forgot what, and I made it a point that day to drive 90 minutes to see this particular Doctor.

However, on our way we encountered traffic. BAD traffic. It was so bad in fact that our 90 minute drive turned into a 3.5 hour nightmare. So, now, instead of being early for our appointment, we arrived massively late, so late in fact that the Doctor had left for the day! It was a rainy, miserable day, I did not know what to do. The receptionist talked to a few people and told me I could be seen by Doctor so-and-so. I needed prescriptions for things, I couldn’t just ‘leave’. It took me 3.5 hours to get here darn it, I was going to get something for all my troubles!
They put is into a room and lo and behold, this very young Doctor and 3 interns came in. This was not unusual-you see, EB patients are like unicorns, rarely seen out there, and I’ve always been eager to teach everyone about my son’s condition, so I obliged to them taking notes and ask questions. Over the course of the hour, I did 99% of the talking. Nobody knew what EB even was, I had to explain and teach this Doctor and the interns everything. They gave me whatever prescription I wanted, and thank God for that, but imagine my amusement when the receptionist then asked me for the $35 co-pay. As I handed over my debit card I told her how ironic that I was paying for teaching people about EB now. Egads!

That is the reality of those with rare diseases. We can never take the word of any Doctor as final, because no Doctor can be a true expert on EB, and we know that even with EB, everyone is so different, mainly because the genetic mutation can vary so greatly from one patient to another, that what works for one will not work for another and viceversa. I am yet to find another patient with the SAME genetic mutation as Nicky. Imagine that!

I came across this video that aired last year on the TV show “The Doctors”, and what John goes through is very similar of what Nicky’s life is like-or I guess, was like at his age. Of course Nicky is older, so now he’s a lot less mobile than he was years ago, which saddens me to no end. However, is thanks to show like these and patients like John, who are willing to put their lives and their skin ‘out there’ that we can attempt to make this condition more known, so that not only Doctors can help the families better, but also that more funds can be donated for research. My personal preference is the EBMRF.

I hope everyone had a Merry Christmas and many wishes for a Happy New Year! Let’s hope 2015 brings much awareness and much healing for all those with EB!

Love and Light,