I've decided to "come out"........ come out to tell my history, my experience, my life of living with Epidermolysis Bullosa (EB).
Epidermolysis Bullosa is a rare genetic disease that is characterized by the presence of fragile skin and recurrent blister formation that can result from minor to mechanical friction or trauma. I am a 54-year-old African-American female; one of several older adults in the U.S. living with this disease. One can only imagine how this could have been a parents' worst nightmare after giving birth to a child diagnosed with this disorder 54 years ago. Life was great then for Tom and Mary Hughes, having established their lives, already with two children. On October 25th, their youngest child was born in Lincoln Hospital in Detroit, Michigan, Marsha Lynn Hughes. The medical staff was CLUELESS as to what disorder this infant could possibly have as this newborn was basically one whose entire body looked like "raw meat" (as quoted by the nurses). The nurses (and the docs) were absolutely baffled by this newborn. However, they did what THEY thought was best including placing a humidifier in the room, which they felt would help relieve the blistering. The humidifier only made matters worse, however. The doctors actually felt that I would not "live long", only because they had no clue with what they were dealing with as no one in this hospital had ever encountered this disease. My mother overheard the staff conversing outside of the room saying, "we might as well let the mother take the child home as she won't live long anyway." Of course, they did not know Mary!!! Her motherly instincts and true determination kicked in and here I am today educating others about the disease.
There are many factors that helped me along the way with a disease that has no discrimination to race, creed, nationality or gender. The main factor in keeping me alive was mom and dad's strong faith in God, as they knew they worshiped a God who would never put more on them than they could bear.
My parents communicated well and worked well with one another; they ended up being married for 64 years! They discussed and agreed on how they would handle my disease, simply with love and care, no different than parents would treat any of their children. Dr. Gall, my pediatrician, explained to my parents that I would not be able to survive any major infection and they would need to take extra precautions to prevent that from happening.
My EB as a child was determined as RDEB because back then only the recessive or the dominant types of EB were known. There was very little other known information regarding different subtypes of EB.
In the 1990s, I officially had a biopsy to try to determine which form of EB I actually had, which is still determined to be an 'inconclusive' form of EB. The only clear-cut facts about my illness at the time of my birth was that I had a rare skin disorder called epidermolysis bullosa, which entailed blistering inside the mouth, entire body and heavy scar formation.
Thanks to incredibly strong and loving parents as well as many positive people in my life, I never really looked at myself as being "different", especially as a child. It wasn't until after hitting my late teens/early 20's that I really understood that I was "different." People called me cruel names and referred to me as that woman with leprosy, the woman with that 'stuff', or the "woman with those bumps", and I could go on, but most things do not merit repeating. I realize that children can be cruel but in my lifetime, I have experienced the cruelest behavior from adults.
