This is always a difficult job to explain some one about what Anna has. When I say that she has skin disease the first response comes is, oh it is just skin, it will go away. Okey. I don't bother to explain it too. I don't want anyone to know that my baby has this devastating disease. I don't want anyone know that we are struggling with this disease. I dreamed about having a health baby, showing my baby to everyone, taking her to parties, going trips, going to church together etc etc. Lot of dreams. But this disease shattered all my dreams. I can't even share a good photo of my baby with any one. Yes I have a baby with disease I should accept it. But I can't, I am living in a hope that soon she will get cured, her disease will go away. May be by miracle or a cure, then I can show her to the world. How soon it will be I don't know, how long I can keep it from others I don't know. I still can't agree that she has some disease that is not curable. I belive truly that there will be a cure soon..
Only very few best friends and our closest family know that she has this disease, others know that she has a skin disease. But they think like it is a temporary thing and will go away. I don't have the courage to tell anyone about this. The most frightening thing is the images they get when they search in Internet. At my work, none of the poeple no that she has EB. Well, no one asks me about the disease's name. No one wants to know more about it, then why I should bother about explaining what she has. Even if I explain there is no use. No one understand anything about how we are struggling daily, mentally and physically. When everyone ask how is Anna, I will say ' she is okey' I will never say 'she is good'. Because she is not good. She is always in pain. She always gets one problem after another. If she is happy one day, the next day she will get some problem.
Another reason I don't volunteer to tell is that I don't think I can work comfortably with them after that. Now that no one know about this, I can forget about EB and work peacefully at work and come back home and worry. Well, not peacefully, at work also, if I am not busy will be always thinking like, does Anna eat anything, is she breathing well, when is her next dr appts, what phone calls need to make for her insurance, supplies etc,
I know one day I need to tell this to everyone, one day everyone will know that she has EB. But could I be able to tell that Anna had EB and she is cured and is doing fine now??? let time tell.
But nowadays I have this strong feeling that I should do something to let everyone know that there is a disease like this. There are babies born in pain and is living in pain. I think I am slowly getting strength to tell world that Anna is battling with EB. At least this blog is a starting point.
Hi Annas Mommy: I am so proud of you. You are taking the first step to being an advocate for EB. The more people know about EB the better. Awareness equals a cure. People can't help find the cure if they don't know about this awful disease.
ReplyDeleteI know how awful EB is. My granddaughter had JEB and passed away when she was only 10 months old. We have to find the cure and soon. God Bless and take care. Love and Peace Leah's Nana
Hey there! My name is Veronica and my daughter is 15 months old. She was born very prematurely at just 24 Weeks gestation. She weighed a tiny 1lb 10ozs.. It was quite a fight we had on our hands!! She couldn't breath on her own, her temp and moisture levels in her incubator were closely monitored, she had chest tubes because her lungs had collapsed and iv tubes everywhere.... But the worst of it was that she couldn't be touched! Her skin would literally fall off in your hands! At two months old, weighingjust 3lbs, my baby girl was diagnosed with epidermolysis bullosa. I know how hard this is to deal with but personally I think you're handling it really well :-) . Its so hard to explain this disease because its so rare. I've had people say some really ridiculous things, even had people look at me as if i'm doing things to hurt my child because she's wrapped in bandages and I feel the same way you do about trying to explain everything. But the previous post says out best. Awareness will lead to a cure! People need to know about this devastating disease otherwise no one can help. Our children suffer everyday right now but maybe.... Just maybe, soon we will find a cure by making people understand what our children are dealing with. Anna is a doll! So beautiful! And clearly you're a fantastic mother and you're doing a wonderful job with her. Keep up the good work :-)
ReplyDeleteI found your blog through our medical supply provider Teneile, I live in Austin!