Today is rare disease day: Although I say it should be called rare condition day instead.... As many of you know I was born with EB, but I’m not going to go in to detail about EB. But if you want to learn more about EB feel free to go to this link: https://debracanada.donorshops.com/ or you can go my blog also. https://butterfly-skin.blogspot.com/
If anyone is wondering why I say it should be called rare condition day this is why: Being born with something that makes you look different or walk or talk it does not make you contagious, so for that reason alone is why I say it should be called rare condition day not disease day as EB is not contagious.
Having EB does not make me rare. It makes me who I am. Being me is ok, or being your self is ok also. It does not matter what you have, it matters that you are you.
I myself have the pleasure of getting to learn something new last year. I had never heard about (FPIES) but I was able to meet a wonderful kid and family that have (FPIES) and the mom has a blog about (FPIES) so I encourage everyone to take this time and learn about (FPIES) or something new. Hear is the blog for every one that would like to learn more about (FPIES) https://fpiesworld.wordpress.com/
When you are born with something so unique you are able to help/teach everyone in the medical field and your friends and your family something new every day.
( It is ok to be you, that is who you are) !
