Young Leadership Committee member, Andrew Conrad: My Life with EB

Throughout 2014, debra of America Young Leadership Committee member, Andrew Conrad, dedicated monthly posts to sharing his EB story. He wrote about what it was like when he was younger, his college days, the challenges he’s overcome, and how he continues to spread awareness for the disorder.


When I started writing about EB for debra of America, I wanted to convey many of my experiences about the disease and how I have dealt, but I didn’t anticipate much of the outreach that I have received since I started writing in March. Over the past 7 months, I have received emails from the Philippines, Ireland, and New Zealand as well as many places all over the United States. It has been inspiring to hear from parents of children with EB or individuals who have EB and how they tackle many of the instances I have written about. One email in particular struck me as especially inspiring. Shortly after my September post about my travels in South America, I received an email from Karen. She was born with recessive dystrophic EB and has lived a long and successful life, having a professional career while being a wife and a mother of 2. As a result of her correspondence, I reached out to her and she sent me a great story on her life growing up with EB. Rather than try and paraphrase, the following is what she sent me in its entirety.

Thoughts From A Soon-To-Be Septuagenarian With Recessive EB

I’m a 68 year old adult with Epidermolysis Bullosa.  I was talking to my sister recently and was amazed to hear myself say, “I’ve come to realize that EB is a part of me, the good and the bad.  I just can’t separate myself from it.” That moment of truth was amazing because until I was 35 years old, after the birth of my second child, I couldn’t even talk about EB with anyone without severe anxiety, including doctors. 

I was born in 1946, the first of the post war baby boomers. There was no known history of skin disorders in either of my parents’ extended families.  At birth, my grandmother, who had one of her own children die of burns, was convinced that I, too, had been burned.  When I was about 6 months old, we moved to a small town near Kansas City, where, at one year old, I was finally diagnosed by a dermatologist, a Dr. Denny. Until this time, the reason for all my injuries, skin, mouth, etc., many of which seemed to occur without provocation, was a source of bafflement for our family doctor. 

Although I have no memory of my infancy and young childhood, I know it was painful.   (For much of my life I experienced unexplained fear and panic whenever I would see a very young child lifted from under the armpits.)   During my school years I had injuries that would cause me to miss school at times, and spasms in my esophagus that could turn any dining episode into a traumatic event that typically lasted for hours. At these times I was instructed by well-meaning adults to stand on my head, eat bread, drink water, cough, swallow hard, spit - all of which only made the problem worse.  

From an early age I taught myself to tend to my own wounds, a painful experience that I didn’t trust anyone else to manage. While sports were not an option for me, I tried a few anyway.  I soon learned to make appropriate choices about what I could and couldn’t do. Walking was always fine if my shoes didn’t rub, and I even learned to ride a bicycle by starting with training wheels.  Jump rope was fun, and hula hoop could keep me engaged for hours.  My parents and siblings were athletic, but they had the good sense to let me make my own decisions, and they never tried to stop me when I made a risky choice or blamed me when that choice resulted in an injury.  Although their heated disagreements with each other resulted in divorce, I always sensed that they were together in their support of me and my efforts to deal with EB.   During this time I also learned to take responsibility for amusing myself, to be persistent and to cultivate my imagination – three skills that have always served me well.

There was almost nothing known about EB in my youth, and no organization supporting patients or their parents.  Through Dr. Denny, my mother had been in contact with a farm family in Iowa whose little girl had a more severe case of EB than my own.  Although my hands and feet were always sore, hers were webbed. We visited them, and I recall a moment when my mother and I were sitting at a the kitchen table with the girl’s mother.  She made the comment, “They say they’re not very smart.” My mother responded, “Not true!  Karen is the smartest in her class.”  I didn’t regard myself as the smartest in my class, so I assumed from that point that I was likely not smart, as a result of having EB.  This attitude stayed with me all the way through college.  I had decided that even when I did well in a subject, I would eventually be revealed as stupid. Thankfully, I was to realize much later that this wasn’t true.

In the ‘60s I went to a public high school in Tampa, Florida that was a top football school.  I was in the “Adaptive P.E.” class of about 10 students, which meant we hid in a room, unsupervised, and had plenty of time for conversation instead of taking part in sports.  I realize we could have benefitted from some type of health education, but actually we benefitted from the opportunity to meet others who had physical disabilities, even though conversations about those specific disabilities were taboo.  Outside of gym class, we just nodded politely when we saw each other in the hall, never revealing the basis of our common understanding. 

I describe all of this to establish what EB was like for me as a child, both physically and emotionally.  In my youth, followingWorld War II, child psychology wasn’t in high regard.  The ideal upbringing for a child with a disability stressed avoidance of self-pity, which assumed the ability to endure emotional and physical pain in secrecy. My point in mentioning these experiences is to stress that I believe it is important for parents to understand that they can’t protect their child from injury or prejudice, and it is important to have conversations with their child and others about EB. At the same time, parents also need to have confidence that their child will find some solutions entirely on his/her own.

Mine is neither the most or the least severe case of recessive EB, and I realize that some children don’t have the same potential for recovery that I had. It is amazing that my EB got better each decade of my life after my 20s. Today, to most people who don’t look too hard, I look like everybody else.  I still am easily injured, but not to the degree I once experienced. I still grapple with issues that are directly or indirectly related to EB, particularly concerning the mucus membranes.  I have esophageal dilations annually and I have taught myself to “reverse swallow,” which allows me to bring up food that is caught in my esophagus.  I have had surgeries for rectal fissures, a colostomy and a reverse colostomy; I have lost all my bottom teeth and have had them successfully replaced by implants.  A trip and a fall can still cause deep injuries, but I am an expert at wound care and know the importance of avoiding infection.  However, I continue to live in fear of severe, accidental injuries where I might wind up in an emergency room and have to rely on overly zealous healthcare professionals or well intentioned people whose reactions are too aggressive.  

On the other hand, through recommendations and experience I have assembled a great team of doctors and dentists who are compassionate and willing to research every problem I have.  I am very grateful to them.  As for therapists, I have had a couple who made a real effort to understand. (I am put off by people who say, “You can’t understand what I’m going through unless you’ve had the identical experience.”  I believe it is possible and necessary to find people who are empathetic, and to assume that some have dealt with their own problems.)  With difficulty, I managed to give birth to two healthy children, neither of whom have EB, and both of whom have become successful adults. One has produced a healthy child of her own.  

Because of EB, I spent years of my earlier life in denial and secrecy, a way to cope with the reactions of others - both adults and children my own age.  How could they possibly know that this wasn’t a contagious disease?  When I was asked why I had so many sores or no fingernails or toenails, I said I had an “allergy.” But that just gave me something to say, and I realized nobody really truly believed it.  Today when asked, I explain without stress that I have a congenital skin disorder, and I don’t worry about whether they understand it or not: it’s complicated.

I no longer try to curl my fingers tightly so people can’t see my hands. The scars on them show evidence of EB and have no fingernails, but they aren’t always red and sore looking, like they used to be.  In my 20s I decided if I would never have beautiful hands, I would have useful hands. Today my hands allow me to paint and produce art that is better than average and they support my brain in computer work, among many other things. 

I managed to reassure myself about my intellectual capabilities enough to have completed a master’s degree and to have held a professional job until my retirement in 2012.  Most amazing to me, I have managed to be married to the same man whom I first met in 1969 and married one year later.   He has accepted me and helped me through many a physical crisis, most of which were directly or indirectly related to EB.  Similarly, when he faced some unexpected physical emergencies, I am proud that I was able to support him.  I have been a good mother, but I will admit with regret that when my children had a minor “boo-boo”, I may have been too quick to brush it off without recognizing that even a minor injury was major to them. 

I doubt that I will continue to improve past this point; even people with normal skin develop problems in old age, and I don’t expect to be an exception. However, in old age I have come to understand that life has its surprises. I want to be open to them.  

In retrospect, I realize that not knowing what to expect was one of the hardest things I had to deal with.  I believe that children, parents, healthcare and mental health professionals need to hear more from older people who are successfully dealing with EB.  The stories aren’t all there yet, but they need to be told. 

- Karen Graham

An incredibly powerful story. I greatly appreciate Karen for opening up and allowing me to share her experience with all of you. Many of the experiences Karen writes about are familiar to each person with EB or any outwardly apparent hindrance. It is so important that the EB community continue to share experiences like Karen so that others understand that they are not alone. An easy way to share your story is by submitting your #EBtoME to debra of America - where it will be posted on their website here.

Thanks to the many advances in communication, especially the internet, there are many more resources available to families and children affected by EB; even so, EB as a disease is relatively unknown so the more stories we can share and the more people that we can reach, the better we will be as a whole.

Any comments or questions for Karen or any personal stories that you wish to share can be directed toward me at andrew [dot] conrad2 [at] gmail [dot] com. Perhaps you will see some of your stories in upcoming blog posts!