Wednesday, October 28, 2009
This week is Epidermolysis Bullosa Awareness week. As most of you likely know, Hope was diagnosed with the Dystrophic form of EB shortly after birth. She had blistering on her ankles from the hospital bands and for the first month or so of life we had to keep her ankles and feet bandaged. She has since not had one single issue associated with EB. She does have reflux and MAYBE as had a few blisters in her throat but she is on reflux medicine and doing just great. She is growing and thriving and beautiful.
After her diagnosis I have to admit that I was scared. Many generous wonderful people who are walking a journey I cannot even fathom in the EB community contacted me offering hope and support for a condition that is so unheard of in most parts of the world. I devoured all the knowledge I could on Hope's conditions so that I could be the best advocate for her.
That said, I cannot even begin to pretend to know what a day is like for a child who has moderate or severe EB. I have been blessed to come into contact with a few of these families and I check their blogs daily for updates on their AMAZING little ones. They inspire me. They make me realize how blessed we are and in the moments where fear grips my heart not knowing how EB will manifest itself in Hope in the days and years to come they cause me to "get a grip" because for today Hope is thriving, she wears normal clothes and diapers, she breastfeeds exclusively and is handled just as any other baby her age.
EB is a blistering disorder of the skin. There are three types, Simplex, Junctional, and Dystrophic. Each of these types can be mild to severe and are characterized by how "deep" the blistering goes or at what layer of skin the missing or mutated anchoring fibrils are located.
For many EB patients, each day brings severe pain, fear of infection and struggle with nutrition. These kids are some of the strongest people I have ever seen and yet their parents often endure strange stares and glares because people make assumptions that these children have been neglected or abused. SO on top of caring for a child who is in constant pain, sometimes having to deal with the fact that the pain has been inflicted by them unintentionally, they have to deal with the fact that the general public has no knowledge of such diseases.
The scary thing is that many doctors also have no knowledge of EB. The thought of Hope ever having to be taken to the ER or being hospitalized literally sickens me. She cannot have band-aids or adhesives on her skin so she has to be treated differently just as all people with EB do which poses quite a problem for hospital staff who have never heard of EB and are reluctant to follow the orders of a parent (who from what I have seen of other EB parents are pretty much qualified to be nurses or doctors themselves.).
Anyway, this week is about getting the word out. Educating people about EB and bringing attention to the fact that there are many people out there suffering with EB. There is a chance that a cure could be on the horizon yet EB still remains so unheard of that more funding is desperately needed!
I do not for ONE single moment take lightly how the Lord has worked in Hope. I am grateful that she continues to thrive and astound us, but there are many children and adults out there suffering with this disorder who need our help. I cannot pretend to know why some people get a form that is so mild and others die from it, but what I do know is that God loves each of us equally and if we can help in any way we should.
So if there is any way you have the means, please consider donating to DEBRA. They are doing remarkable work and have been such a helpful resource for me. They even sent us a welcome home package when Hope was born with some sample bandaging supplies, a soft blankie, a couple of cloth diapers, loads of information, and an IV kit should she ever need to be hospitalized. They are a remarkable organization that deserves more recognition and funding for the work they do. Please join us in supporting them on this EB Awareness week and if you have time, click on one of the families blogs to the side of this blog under EB Families and get to know these kids and their remarkable families. I know you will be blessed and amazed.
Posted by boltefamily at 10:19 AM