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.

JUNE 2014
For this month’s post, my mother has graciously volunteered to be interviewed about life growing up with two children with EB and the challenges that she faced. So without further ado, below you will find what transpired.

Andrew: What went through your head when you realized that you had a child with a rare skin disorder, EB, and you had no idea what you were dealing with?

Angie Conrad: I don’t think I hit panic until I started to research the disease.  Since you were born with no skin missing; I didn’t realize it was serious at first.  I think any parent is unprepared to hear that their newborn child has a potentially fatal disease.  Thirty years ago, when you were born, there was little known about the disease and many of the diagnostics that are available now, were not in place then.  When blisters started appearing on your hands and then healing with scars, I knew something was not right.  There was a disease mentioned at the time called Epidermolysis Bullosa, but we were assured that you did not have THAT!  It took visits to four different doctors before someone actually said, “I think this is serious.”  We were directed to a wonderful doctor in Houston, TX named Moise Levy who specialized in pediatric EB.  He was able to confirm the fact that you had the disease. I remember the horrible day you had to have a biopsy done at the Children’s Hospital.  I became a member of an exclusive club of shell-shocked parents dealing with very sick children.   I still remember the children in the waiting area looking scared and exhausted being held by their parents.  I sat and prayed for you and for those children.

Where did you go for information to learn about how to manage a baby with EB?

There were not many places to go for information thirty years ago, but Dr. Levy gave us the information for  debra of America.   They were my lifeline.  I also started to do research in books and on-line.  Through debra of America and Dr. Levy, we were connected to other families in Houston also dealing with EB.  We were informed that you had a dominant form of the disease which meant that we would not have to worry about having another child with EB in the future.  When I became pregnant with your brother, I was able most of the time, to convince myself that there was nothing to worry about.  Unfortunately, they had misdiagnosed you, and your brother was also born with recessive dystrophic EB.  He was born with no skin on his left leg and a deformed left foot.  There was stunned silence in the delivery room when he was born.

How did you figure out what bandages to buy?

Meeting other families was a huge help in trying to deal with how to take care of you.  Mostly it was hit or miss on what to use and finding out what worked.  I remember the first thing I did was have you sleep on a sheep skin rug in your crib.  The worst times were when I inadvertently hurt you by just handling you.  I remember taking a huge strip of skin off your leg with the setting on my wedding ring.  I was crushed and felt horrible guilt and never wore my ring again when changing your diapers or bandaging you.  Life was very difficult as you started to grow and learn to crawl and walk. Falling down was anguishing for you and me.  Many times the skin from your palms or knees was completely torn off in a fall. The pain for both of us was excruciating.  Many times you would pass out and I would hold you in my arms asking God to intervene.  Watching your child suffer is the worst pain a parent can endure.

Kids can be stubborn so what was it like raising a child with EB who wanted to do all the normal things that a typical kid wants to do?

I decided early on that I was going to raise you and your brother as “normally” as possible.  You were going to do all the things that little boys were supposed to do.  You learned to ride a bike, swim, climb, play baseball, basketball, golf and anything else you wanted to do.  We knew the potential consequences but refused to be held back.  You knew your limitations and made adjustments.

You have mentioned to me a few times that somebody turned you in for child abuse when you were going through the grocery store with me.

You were almost four years old when we moved to Peoria, IL and I was immediately dealt an emotional blow when someone called the child abuse hotline and informed the state that she saw children who had obviously been” burned with cigarettes on their hands and bodies. That was a low point. Knowing what care I took in protecting you and being a good mother to do you and your brother, then being accused of “hurting” you was almost unbearable.

You present to my kindergarten class on EB and probably some of my later years in school. How did this come about?

After the child abuse incident, I decided to be proactive in getting the word out about EB.  We held fundraisers at your preschool, we had feature articles done in the newspapers, and most importantly; I did a question and answer talk at the beginning of every school year for each of your grade school classes.  The school and community became very supportive and understanding of your disease and limitations.  I felt so blessed that my prayers were being answered in this way.   There were always going to be people who asked “stupid” questions and make accusations, but most people are sensible and sympathetic.

Any other thoughts?

My favorite memory of you and your brother growing up was the “Little League” days.
You were called “out” at home plate for not sliding in as the rules required.  All of your teammates came off the bench to explain to the umpire that you were physically unable to slide due to your disease.  A huge cheer went up from your young teammates and in the stands when the umpire yelled, “SAFE.”   I still tear up when I recall that memory!!

I look back on what EB has taken from you and your brother, but most importantly I am able to thank God for what it has “given “ to you.  We have gone places and met people through this disease that in a normal life you would have never experienced. You got to play tennis with John McEnroe and Mats Wilander ---- a dream most tennis players never realize! You and your brother have a compassion for the disabled and the underdog, which most people will never be able to relate.  Even though you undergo medical procedures and endure hardships most people don’t, you never pity yourselves.  I am so proud of the men you both have become.

I want to thank my mom for taking the time and sharing a little bit about what it was like being a parent with children with EB. I hope that this is helpful for all the new parents that may be going through the EB experience. I think it is important to realize that EB is not something that necessarily prevents you from accomplishing what you want to as long as you understand your physical limitations. Although the disease can be demoralizing at times, it is only physical. Parents should understand this as well.  If anyone has any comments or questions for my mother, feel free to email me and I will be sure to pass them along. Maybe you will see one of your questions answered in an upcoming blog post.

Angie Conrad is the mom to Andy and Sam Conrad who both have Recessive Dystrophic EB.  She the General Manager of a Christian Bookstore in Peoria, Illinois and the author of the book ,"At the Feet of Ordinary Women." You can reach her at yaz001 [at] aol [dot] com