Category Archives: Epidermolysis Bullosa (EB)

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

On Self-teasing

One more week. We’re hoping that’s what I have left, is one more week in this bandaging that makes me look as though I have elephantiasis of the big toe. Read the rest of this entry

On yet another surgery

You know, while being laid up for the past week, I thought I’d take more time to myself to blog. Alas, I didn’t do nearly what I had expected, except to plant myself on our seeping couch. (more…)

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 IV)

Into Adulthood

Circa 1995

By the beginning of college, I was no longer using the wheelchair, at all. I walked to all of my classes …in shoes and sometimes in boots. I had also conquered the Mall of America on foot. When this new-found freedom came boys, parties and the college and life experience that I personally felt I had been hindered from for so many years. I rarely told people about my condition, and felt that it was only a need-to-know basis. At the same time, however, I’d wear shorts or tank-tops that obviously revealed my scarred legs. This became an issue at one point a few years later…. One that I never thought of.
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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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It’s not just a teen issue

We, as adults are hypocrites. There’s no denying it. Just look around. It’s nothing new. For generations, we have told our kids to “do as we say, not as we do.” My mom told me not to smoke, yet she has been for more than 40 years. My grandparents told their own kids to “wait” until marriage, I’m sure. Yet, both of my sets had children born less than 9 months after their wedding dates. These were probably considered harmless. But in today’s society, what we think is harmless now has deadly consequences.

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