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Monday, March 14, 2011

there is nothing simple about simplex

I have been debating about doing a post on this topic or not.  But I see it as a way to educate those who don't know much about Epidermolysis Bullosa and for those who don't know much about the differences between the types of EB there are.  

I think when most people think of Epidermolysis Bullosa Simplex, they think mild and a simple form of EB.  And while there are mild forms of simplex, the kind we have, EB Simplex Dowling Meara is far from mild or simple, especially during the first couple years of life.  In EBS-DM, EB is usually present at birth and can range from many blisters to massive areas of skin loss.  

When Sami was born she was missing skin on her ankles and wrists.  The ankles were a reddish-purple color and the skin was so thin, the slightest tough caused to come off and bleed.  As the days went on, more and more blisters appears and more and more skin come off.  By the time she was 4 months old 75% of the skin on her body was either missing or severely blistered.  Unfortunately I don't have any pictures of her when she was that young that I can post on here.

With Garrett, he was more severe at birth than Sami was.  He was missing skin on both knees (it looks like upside down hearts had been carved out of his knees.  Both ankles and feet were missing all their skin and they were dripping blood.  Again, we never took pictures of his wounds at birth.  And like with Sami, in the days that followed so did the blisters, most of which had fluid in them that were a golden-honey color (very common in EBS-DM).

Now with baby Joey, he had all the wounds Sami had at birth, PLUS the wounds Garrett had, PLUS a few blisters, and he was also born with 2 bottom teeth.  A common occurrence in EBS-DM, though it doesn't occur in all who have EBS-DM.  Sami nor Garrett were born with teeth, but I was.   

We didn't have much time to get many 'clinical' pictures of Joey before we had to wrap his wounds, but below are some pictures of his wounds within a few hours of his birth at his first dressing change.  They are of his feet, knees and legs.  I don't remember which leg was which but they were very similar at birth.

Now he is 6 days old, his wounds from birth are healing but are still very delicate and bleed at the slightest touch.   His hands are now missing skin and are pealing very badly.  His diaper area is severely blistered.  His arms are ok and vary from day to day.  His lower back is starting to break down as well as his lower tummy.  Around his mouth is also really bad at times.  We pop anywhere from 25-30 blisters a day.  Some small, like the size of a pin head, others are the size of quarters.  Changing his diaper can take anywhere from 5-20 minutes depends on how much of his dressings got dirty.    I don't mean to sound like I am complaining, just to show that just because someone has EB Simplex, doesn't mean it is always mild or simple.



  1. Thanks for sharing the photos and information. I've never really seen simplex before.

    Dana Z.

  2. Sara thanks for posting this, I think people do have a miss conception on how severe simplex can be.

    Katie Kacmarsky
    EBS - DM

  3. Hi Sara: Thanks for posting the pictures of your precious baby boy. Those pictures say it all, doesn't it? EB is one terrible disease.
    Hope you are feeling okay. That baby of yours has the best care ever. He sure is one lucky baby boy. Take care my friend.
    Love and Hugs Love Leah's Nana