Through the Eyes of a Survivor

Make an impact and share your story. How has Epidermolysis Bullosa changed your life?  Are you a parent, advocate, caregiver? Your journey could help make a difference…your story could impact others and start a huge ripple effect.

If you would like to submit a video or story please contact us at irefuseeb@gmail.com

 

 

Photo Courtesy of Laurie Sterner
Photo Courtesy of Laurie Sterner

Sarah, 14 Recessive Dystrophic EB

My name is Sarah and I live in Elizabeth NJ with my mom, Maria and my brother David. My grandma, my aunt and my cousin live downstairs. I have a dog and a cat. My dog’s name is Kiwi. She’s a toy Yorkie who is almost 4 and my cat is a boy Ragdoll named Max who is almost 14! As soon as I was born the doctors noticed that my skin was sloughing off and when they suctioned my mouth the lining of my mouth came out. They didn’t know what was wrong, but they called another hospital and I was picked up that same night. A few days later they told my parents I had EB… See More

 

 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. See More (Reprinted with her permission)

 

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Luataro, 16 Months Recessive Dystrophic EB

Luataro is an adorable toddler from Argentina.  His father Sergio shares just a little about his son and EB.  See More

 

 

 

 


1340433588748Derra Sabo, Recessive Dystrophic EB

I may have bandages on my legs and occasionally on my arms, my hands may look like fists and it may take an extra dose of creativity when accomplishing certain tasks, but I wouldn’t trade my life for anything. I love my family and friends, I love cooking in the kitchen, dancing, music, movies. I am a writer and an artist. I am strong, secure and not afraid to stand up for what i believe in. I love going to amusement parks, traveling and spending all day at the beach. Family BBQs and holiday parties are the best. Even girls day out and getting my hair done at the beauty salon. “I am an adventurer by fate, not by choice” – Vincent Van Gough…. EB is a major disorder to have, but its only a small part of who I am. My name is Derra and I am an Electric Butterfly!!  See More

 

IMG_0469 (2)Victoria J, EB Simplex

I always wanted to tell my story but I’ve always been afraid of talking about my condition because of the fear of what people would think. But I thought if there are people out there and that are worse then me but still have the courage to do so then so can I. I have learned how to accept the way that I am and to love myself because of it. Although I still do have daily struggles and still deal with some ignorance of closed minded people I try not to let it get to me. See More

 

857516_129477437233744_173465261_oFaith House, 67 Recessive Dystrophic EB

My name is Faith and I am 67 years old and I suffer from Recessive Dystrophic EB. I found out about my disease when I was 21, that’s when they gave it a name.  Up until then I was sick and the doctors and I had no idea why. After we found out what it was, the disease slowly progressed. I entered Upstate Medical Center after being comatose for 6 weeks, my previous doctors couldn’t help any longer.  There they biopsied my leg to tell exactly which form of EB I had and it came back positive for RDEB. From that point on, Upstate became my hospital.   See More

 

facebook_1580589864-20130418-115359Rachel Nasuti, 24 Recessive Dystrophic EB

I’m Rachel and I just turned 23 and have RDEB, and I am glad I do because it has made me who I am. I am independent and very strong willed. I love when someone says to me you have EB you can’t do that (cook, drive, travel, have a job) but OH boy don’t tell me I CAN’T. If you do I will grab you a chair and you can sit back and relax, my fingers may be fussed and may take me longer but, watch me do what you said I can’t!! See More

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