IamA 30 year old female born with a rare genetic skin disorder called Epidermolysis bullosa subtype junctional AMA!
October 25-31 is EB awareness week. Epidermolysis bullosa is a group of rare genetic skin conditions that result in easy blistering of the skin and mucous membranes. Blisters and wounds can be caused by the slightest of touches, the skin is very slow to heal. It is usually referred to as the “worst disease you’ve never heard of” or skin as fragile as “butterfly skin”
There are different subtypes and severities. While I am mostly able to live as an independent adult, EB very much consumes every aspect of my life. I was born and raised in the United States, immigrated to Canada in 2015 and have had a vastly different experience in the health care system regarding my quality of life. There is no current cure, treatment for EB consists of bandaging the skin for protection and preventing infection as best as possible. For more info visit www.debra.org Let’s talk about it!
Edit: I really want to thank every one who asked questions, commented, or messaged me. This one my first time doing anything remotely like this, and it went better than expected. Remember to be kind to people, and if you can’t be kind, keep your comments to yourself.