This is most definitely not a Pinterest-worthy post, nor will it be featured on my Instagram feed or promoted visually. I struggled with adding the photo below all week. I love pretending I’m totally normal. I wear heals when I can, I love fashionable shoes and boots. Generally I can hide my condition pretty well.
Epidermolysis Bullosa (EB) is a rare genetic skin disorder that causes blisters from friction. We develop painful blisters from shoes, walking, clothing, driving, cleaning, standing around, sitting around, pretty much anything that can rub the skin.
I grew up being defined by this. Everyone at school, my church, and extended family knew me as the little girl with blisters.
As an adult I refuse to be labeled by it and try NOT to be different in any way. I don’t want my daughter to be either. (One of my three daughters has it, I had a 50% chance of passing it on with each child)
Which is why I don’t often talk about it publically.
- It is a genetic disease
- We have the Simplex form of it
- Simplex improves with age, which is why I look a lot less affected than Nya
- It is not contagious
- Yes, it can be very painful
- Heat makes it worse, it’s generally a lot better in the colder months
- There is no cure
- It is very rare
- There are currently charitable organizations in many countries around the world called DEBRA.
- The organization dEBra Canada provides resources and assistance to Canadian families with the disease.
- In Canada we currently have no research projects for EB underway
- There are research projects currently happening in the US and Europe
Nya is almost 12. She’s a total trooper, she deals with pain every single day. This is the first school year she’s been able to wear something other than slippers every day at school. She has a custom wheelchair coming soon for those times we want to walk through the mall, go to a Fair or other heavy walking activities. In fact she’ll probably use it (we have a loaner right now) tomorrow for Trick’or’Treating. But on the upside, she refuses to be defined by it – as she plays on the volleyball team for the second year in a row. She blows me away!
This is what my feet look like right now under my boots and socks. This is pretty sore for me (due to a trip I just took), but they will heal and should stay fairly clear for the winter.
A wise woman (whom I don’t know personally), Cameron Reeves Poynter posted this on Facebook today and it resonated with me for the most part. Although I have to say I have never thought of it in the way she says “But it’s also beautiful”.:
Someone told me it’s National Epidermolysis Bullosa Awareness Week this week and encouraged me to post something about it. I didn’t know what to share. I don’t have pictures of our blisters (you’re welcome). I don’t have pictures of the guttural sobs that come from my boys. I don’t have a picture of my husband carrying an 8 year old to the bathroom because he can’t walk. I don’t have a picture of loneliness from things we miss out on because of a genetic disease that no one has ever heard of.
I don’t have a picture of what pain feels like.
Even if I did have those pictures, I wouldn’t share them. Not because they’re ugly or agonizing. But because they wouldn’t be the whole picture.
Yes this is a terrible disease. And yes it’s hard. But it’s also beautiful.
Because of it, I had to learn how to be independent at a very early age. I had to learn to be comfortable with being different, with being myself. And although it was painful, it made me stronger. It made me confident. It made me empathetic. It made me appreciate the friends who would hang back and sit on the sidelines with me. It made me understand that what a person looks like from the outside is only a fraction of their story. It made me who I am. And I hope it will do the same for my boys.
And that’s not such a bad deal after all.
For more information and to donate go to www.debracanada.org