A diagnosis of Epidermolysis Bullosa is life changing. I hadn’t heard of EB before Kiira was born, as most people haven’t. Due to the lack of awareness, there is a lack of resources, medical attention, and funding for research. We were fortunate to be at a hospital with doctors who had at least heard of EB and nurses were so diligent about learning about EB and how to wrap a baby to prevent infection and protect Kiira from further injury. Unfortunately, the bandages needed to keep Kiira safe are not covered by insurance so we went home with bags filled with bandages from the nurses to last a couple weeks and there are amazing organizations and generous donors who help families like us fill the gap, but in some countries, getting access to the bandages are nearly impossible. Not to mention, they cost thousands of dollars per month. In addition, we had to go from 3-4 bandagers (1-2 nurses and us) to 2, one being me and the other a family member or friend whom I trained. It is our responsibility to know if she has an infection, how and when to pop blisters, how to bandage new areas of injury, how to incorporate 2 hours of bandaging into our day on top of regular newborn responsibilities that actually take at least twice the amount of time because of how careful we have to be with Kiira. No decision is easy–what bottle do I use? Do I coat the nipple with Aquaphor or Coconut oil so it doesn’t blister her mouth? What clothes can she wear so that seams don’t cause blisters? How much can I touch her, how do I pick her up, how do I get her in and out of a car seat? How do I bathe her? What toys can she play with? These are just a few of the questions we’ve had to answer and as she gets older, my list grows.
Over the past year, Kiira spent a month of it in a hospital, which isn’t much compared to many others with EB. She has seen numerous specialists, including a dermatologist, hematologist, physical therapist, occupational therapist, speech/feeding therapist, gastroenterologist, ophthalmologist, bone marrow transplant team, radiologist, geneticist and pharmacist. As she gets older, more specialists may be needed because EB doesn’t just affect the skin. It affects the interior path from the mouth to colon, ability to absorb nutrition, major organs like the heart and kidneys, eyesight, muscle and bone deterioration, skin cancer… The list goes on. Like I said, EB is life changing.
Awareness–spreading awareness is crucial. It could mean more support, better skin care products (creams and bandages), better medical procedures, a cure.