Landon's Hope EB Awareness Week 2018 Social Life 

In this video we talk about the lack of a social life we have as we focus on Landon and our boys to keep giving them a good quality of life.
For EB Awareness week this year we are doing a series of videos we plan to share to those we know and do not know. There will be in total 6 videos. Topics include:
What is EB?
Mental/Physical/Spiritual Stress from EB
Siblings of someone with EB
Normal everyday developmental and other things
Financial Burden
Social Life
Be sure to come back each day this week to learn about the other topics. Be sure to share this or share about EB in general with everyone you know.
What is EB?
"Epidermolysis Bullosa (ep-i-der-mo-lie-sis bu-low-suh), or EB, is a rare genetic connective tissue disorder that affects 1 out of every 20,000 births in the United States (approximately 200 children a year are born with EB). There is no treatment or cure. There are many genetic and symptomatic variations of EB, but all share the prominent symptom of extremely fragile skin that blisters and tears from minor friction or trauma. Internal organs and bodily systems can also be seriously affected by the disease. EB is always painful, often pervasive and debilitating, and is in some cases lethal before the age of 30. EB affects both genders and every racial and ethnic background equally. Daily wound care, pain management, and protective bandaging are the only options available for people with EB." (from debra.org)
Landon's Hope EB Awareness Week 2018 Social Life