...it takes thinking outside of your comfort zone!
Some wounds don’t always heal as quickly as they should & some wounds don’t ever heal at all! Bianca’s type of EB is called Recessive Dystrophic Epidermolysis Bullosa. She produces very little of the “glue” that holds the skin together so her skin can be as delicate as onion paper or a butterfly’s wing. With the incorrect way of healing you can easily destroy it by the slightest touch. Think of grass that has no roots…how can it bind to the soil without any roots? Or like Velcro missing the rough hooks on one side that does not adhere to the soft loops on the other.
I have taken into account how important it is to keep a close eye on wounds. When nutritional intake is diminished due to blistering of the mouth, esophageal strictures & discomfort of any sort these wounds can take a lifetime to heal. As some of you know this past summer Bianca had her 2nd esophageal dilatation. It was something we pondered over & over for months before she was adamant in moving forward. For more than an entire year she had these excessive wounds on the back of her thighs that would stay open for weeks, heal for days & then breakdown all over again. This was a vicious & malicious cycle that had no ending in site. Today these wounds have finally closed up & she is doing much better in these chronic areas. She still has breakdown but not like before. I’m not saying we will be like this forever because we never know what could happen the day of tomorrow. Although I pray day in & day out that we do have closure for at least a year to give the area enough time to build some resistance. What I am saying is that I am thankful for today, right now, this minute that we were able to see these areas close up for more than a few days & have some level of comfort. Comfort is very rare with EB – as rare as EB itself. So these little spurts of closure in persistent areas of wounds are welcomed!
This is life with EB – we have to find the smallest piece of hope to fully understand what it’s like to be grateful for the little things in life!
It’s important to remember that EB is RARE…is NOT CONTAGIOUS…it’s GENETIC…it affects ALL RACES…& most importantly for this moment it has NO CURE!
I am attaching a diagram that gives you some basic details on What Is EB released by debra international. It’s a wonderful layout & drives the point across!
FRIENDS & FAMILY ~ For EB Awareness Week 2014 how about posting a picture of Bee (& yourself if you have it!) & hash-tagging it with #ebonourterms, #buttersbee & one of the following plus tagging her or us if you are a part of our social networks:
#HealEB #CauseTheWave #EBRP #EBWeek #EPIDERMOLYSISBULLOSA #RDEB
~*~*~GRAPHIC PICTURES BELOW~*~*~
Bianca's Wounds Back In October 2013
Bianca's Wounds Today October 2014
One thing to point out is the last picture on the second row. I took it w/a gray/purple tone to show that while a wound is healed it will forever show up as a purple spot when she's cold because of the trauma caused in the area by a wound/blister. For those that know me usually know I freak out when I hear a spot that has never been injured get damaged - this is the reason why...
|She is the reason to keep on living! Always will be! My Butters!|