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.

MARCH 2014
Hi, my name is Andrew Conrad and I am very familiar with the Debra organization having grown up with RDEB. Thank you Debra for giving me a platform to write about my life experiences living with recessive dystrophic EB. My Mom used to be involved in the foundation a great deal when I was younger. The foundation helped our family immensely growing up and I wanted to give back by blogging for the organization using my experiences with RDEB as a way to show that it is possible to live life to the fullest while managing this skin disease. My hope is that, through these posts, individuals with EB as well as families, can find encouragement and advice to make dealing with EB a little bit easier.

I am 27 and live in Chicago, IL. I have a younger brother who also has RDEB. I have been a fairly independent adult, essentially moving out of my parents’ house at age 18. My parents moved overseas to Singapore as I went to college as a freshman. I graduated from the University of Illinois with a degree in economics and now work for a medium-size commercial bank in Illinois as an AVP of Commercial Banking in and around the Chicago market. I am an avid cross-fitter working out 5 to 6 times/week. I was a 4-year varsity tennis player in high school and taught tennis all throughout my high school and college careers. Last November, I ran my first half marathon in Madison, Wisconsin finishing in 2 hours and 8 minutes. I have plans to run another half this year along with a few other races that might come my way throughout the year. It is my dream to tackle the Chicago Triathlon. I am also in love with travel. My goal is to travel to all 7 continents by age 30 having already knocked off 4 and going to South America, my 5th, this summer.

Despite all the things that I am still able to do, it isn't without its problems. I am grateful for all that I am able to do living with EB. I have figured out what I can and can't do and how to manage the things that I want to do even though it may hurt. I have had numerous EGD / dilatations due to strictures in my throat but as far as surgery goes, that is the extent of it, so I consider myself fairly lucky. Running, lifting, and playing tennis keep my hands and feet in constant pain, but I have coped by using various batting gloves, lifting gloves, multiple socks, and extra padded running shoes. I have found that the more active and in-shape I keep myself, the easier it is to manage EB. Diet has also been a big positive to EB management.

In the coming months, I plan to discuss in more depth some of the subjects that I have touched upon as well as try to answer questions from you. Please feel free to email me at staff [at] debra [dot] org with any questions or comments. I will make every attempt to answer in upcoming posts. I want you to be encouraged and know that living with EB is not hopeless. With proper care and guidance you, too, can achieve much, much more than you thought possible.