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10 things to never say to someone impacted by EB

mikekatepoolEB (Epidermolysis Bullosa) is a group of inherited skin disorders in which the patient is missing the proteins needed to produce the correct amount of keratin in a person’s skin. As a result, someone with EB can easily blister or lose skin. Children with EB are also known as “Butterfly Children” because their skin can be as delicate as a butterfly’s wings.

As someone who was born with EB and has lived with it for now 40 years, I’ve heard plenty of well-meaning words from people. Some of them, however, have been out of ignorance or innocence. Some things have been downright hurtful.

Here are some things you may want to refrain from saying to someone impacted by Epidermolysis Bullosa (EB):  Read the rest of this entry

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Raising the compassionate child

Kathryn was three when her Aunt Tammie died in July, 2007. Tammie left a husband and two children, ages five and nine, that Monday morning. Kaci has no memory of her and vaguely remembers going to Texas for her funeral. Read the rest of this entry

Married in Sequined Slippers (Part V)

Baby on Board

Earlier in life, I had envisioned myself having three children. I always said that the first would be a boy, the second, a girl and the third could be whatever he wanted to be. I had a feeling that my first child with my former boyfriend would be a boy, but deep down, I had this irresistible hunch that my first child would be a girl.

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Married in Sequined Slippers (Part III)

Article in Rockdale Citizen, 1979 (Click to enlarge and read)

Adolescence

By the time I was fourteen, I was able to walk long distances, but could not do so in shoes. I was in an adapted physical education class because I was not able to the things everyone else could. Pull-ups would shred my hands, as would push ups. If I had been hit by a ball, my skin would have come off upon impact. Asking me to run sprints was like asking a turtle to play fetch. It was impossible. I had days where I would come to school in slippers because my feet were so swollen and sore. Other days, I would walk a mile.
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Married in Sequined Slippers (Part II)

Happy Birthday, Mom!

My mother turned 28 on October 25, 1974. On that same day, she received a phone call advising her that her one-week-old infant was given two weeks to live. As a mother now, myself, I can only imagine how much her world sank around her. I had been diagnosed with Epidermolysis Bullosa Dystrophica at birth. The doctor that delivered me had seen one other case before in a set of twins. They died just after birth. Read the rest of this entry

Married in Sequined Slippers (Part I)

What is Epidermolysis Bullosa?

Some would describe Epidermolysis Bullosa as horrific. Some use words like “Painful”, “devastating”, “horrible”, “dreadful” or “insurmountable”. It’s also been described as “The worst disease you’ve never heard of”.
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