What is EB?
From the Perspective of a Husband
From the perspective of a husband who has a wife and friends with Epidermolysis Bullosa (EB), I believe that although EB is an unquestionably challenging disorder for people who have it, EB is essentially a skin condition that functions as a disguise. Underneath the veil of sores and blisters is an angel of power and warmth—at least, that’s what I’ve seen in my wife and friends.
I believe it’s safe to generalize and say that whoever is faced with this genetic adversity in any of its forms (Dystrophic, Recessive, Junctional, and Simplex) experiences a variety of opportunities for growth and achievement seldom available to others without EB. I’ve noticed that the hardships and triumphs they encounter tend to fashion a character of enduring fortitude, compassion, and excellence. The resulting temperament has an impressive impact for good on those around them.
It’s been our experience that people observe those struggling with EB and can’t help but experience a feeling of awe and admiration. Frequently, people comment that they have a renewed motivation to withstand their own problems and a resolve to be more optimistic in overcoming their struggles.
So, while on the surface the condition appears very debilitating, it is actually quite enabling for EB survivors and those who associate with them. The goal of USeb is to uncover and develop these inherent abilities to benefit those with EB and society.
Medical Definition of EB
Epidermolysis Bullosa is a rare disorder primarily characterized by severe blistering of the skin. But EB is much more than a skin disorder. It affects all the mucous membranes including the lips, mouth, tongue and esophagus, as well as the cornea of the eyes. Patients with EB may suffer chronic open wounds covering large surfaces of the body. They suffer malnutrition, chronic inflammation, persistent infections, anemia, digestion problems, Alopecia (hair loss), extreme itching, disfiguration of the hands and extremities, cancer and many other serious maladies. This disorder can be quite severe and even lethal in some forms. To learn about this genetic skin disorder through the eyes of a patient with EB, click here (www.ebpatient.com)
EB should no longer be known as just a “child’s disease.” With technology and modern medicine, people with severe forms of EB are surviving well into their adult years. As adults they face new challenges and have different needs. Our goal in creating USeb is to address such needs on an individual and group level in order to make self-reliance a reality.
Some challenges people with EB face are their dependence on medical treatment, daily wound care, and government programs. Many adults with EB (but not all) are so involved in keeping up their health that they can’t support themselves by getting a job and making a living. It’s hard enough to do the daily living let alone accomplish anything else worthwhile because their motivation dwindles from not feeling well and lacking energy. Even if they can become employed, a struggle comes from the employers not understanding their situation entirely since EB is so rare. Although they may not show it, people with EB have to deal with chronic pain.
Another challenge EB survivors deal with comes from their well-intentioned caretakers, friends, parents, and strangers. Because of the fragile skin, spontaneous blisters, open sores and fused fingers that some types of EB cause, concerned people often react with a desire to do everything for them. This effort can complicate any transition into independent living because people with EB miss out on valuable opportunities for self-reliance and independence. It also communicates to them that they are incapable and helpless. Through USeb, we want to change this thinking and give them appropriate assistance that will empower them to do more than they thought they could.
With minimal assistance, a person with EB can go from being homebound to a person who graduates from a university, produces a music CD, gets married, and begins her own corporation. When my wife, Jamie, went to college, she was able to complete it with only two hours a day of assistance. A homehealth nurse helped her change her bandages each day and a homehealth aide helped prepare meals and do light housework.
In many cases, individuals with EB are denied home healthcare simply because it is such a rare condition that the people making decisions misunderstand or refuse to believe their legitimate needs. Insufficient financial support from governmental agencies is another reason why much needed healthcare is denied them. Without this help, many people with EB never leave their homes. They have a very difficult time living independently. They continue to be dependent on their parents for support. We know cases where the parents, however, have essentially abandoned their children or deprived them of their support after the age of eighteen.
These are some of the needs USeb plans to address by creating a camp where kids can be taught and motivated to become self-reliant, beginning a mentoring program that pairs trained experts and people with EB for the purpose of teaching desired skills, establishing a scholarship fund that will provide financial support for nurses and aides, and ultimately building an EB home where people with EB can have a jump-start on living independently and working professionally.
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