What is EB?

WHAT IS EB?
Epidermolysis Bullosa is a painful, life threatening disease of the skin. Sammy has the form called Recessive Dystrophic. In his case the bottom layer of his skin does not adhere properly to the other layers because the collagen 7 protein involved in this function is either missing or mis-shapen.
Because of this genetic defect even slight friction can cause several layers of skin to rip away creating horrific, painful wounds. Normal daily activities can cause blistering or tearing of the skin. Currently there is no cure for EB, only wound management as treatment. Despite the challenges Sam faces with EB, he displays amazing strength every day and inspires those around him.

Friday, October 31, 2014

Last Thoughts EB Awareness Week 2014

     For the last day of EB awareness week I thought I would share some photos of Sam’s wounds and daily supplies and describe what he typically goes through every day dealing with EB. On bath and full change days Sam soaks until his gauze can come off without pulling on wounds, then removes gauze (by himself now), soaks again in new water, and then washes wounds with our help. Once this is done the skin is moisturized, blisters are drained, ointments are applied, and wounds are dressed with new gauze. The length of this process can really vary depending on severity of wounds but typically takes at least 2 to 3 hours from bath soak to new gauze being finished.  Every day, no matter whether it is a full change day or not, Sam must go through gauze patch ups, application of ointments, blister draining, eye care (a newer issue for him), intake of daily medications and vitamins/supplements (nutritional needs). For Sam the external wounds are most definitely not the most painful part of EB, the internal wounds in his mouth and throat are by far what cause him the most discomfort.

As much as I prefer to emphasize Sam’s strength, the fact is EB is a horrible life threatening disease and it wears on him everyday. We have hope that someday there will be a cure for those who suffer from EB but for now we need to help spread awareness to fund current promising research.

 No this is not the face he has during his whole bath and gauze change but he still manages to smile at times during the process and is great at finding ways to distract his mind by talking about the weather or watching his favorite shows.
 Various medications and supplements Sam must take every day to stay healthy.
 The typical wound supplies we use for Sam every day.
 These pics of Sam's feet are a little graphic but they show the wounds he deals with every day. Sam absolutely amazes us when he pushes himself to do things he loves like play soccer!

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