i live with eb it’s a genetic skin disorder i’m missing a layer of my skin so it blisters really easily from friction i won’t let it stop me from achieving my dreams i’ve found a lot of accomplishments in my life i’m proud of our business coco and shay because it’s helped a lot of people with eb and different skin issues good morning courtney time to wake up i’m courtney kajawa and i live with eb which is epidermolysis bullosa how was your pain this morning not too bad i’m just gonna change your back dressing a little bit and it’s a genetic skin disorder i’m missing a layer of my skin so it blisters really easily from friction so i’m wrapped head to toe in dressings independence is something that’s been very difficult to achieve with epidermolysis bullosa because her hands aren’t able to function properly because of all the scarring she has i just took off her dressings and i checked to make sure that all the areas are covered oh look at them there we found out at birth that courtney had eb something we had to understand is that we couldn’t prevent the disease from happening we were just going to take one day at a time one step at a time we do her back first and then we do her arms and legs and then we do her feet so when i was 18 years old i was diagnosed with a cancer called squamous cell carcinoma which is a common cancer for people with eb to get when they’re older and i got it on my right hand and the timeline between receiving the diagnosis and getting the amputation was a few weeks the first surgery was on my right hand and they were able to remove all of the cancer so i didn’t have to have another operation this is jessica we were very fortunate to get her through a program called wigs for kids it’s been a hard transition losing my hair and being able to accept myself jessica has just given you a lot more confidence and it just matches so nicely with your original hair color she was always a strawberry blonde yeah it makes me feel like me a bit more [Music] i found a lot of accomplishments in my life just even being able to travel different places and get through each day with pain i’m proud of the cocoa and shea company that we’ve started it’s helped a lot of people with eb and different skin issues we made the coconut oil different deodorant and we made something called the shea bay spray which is a spray for the room knowing that the coconut oil helps me so much makes me feel really good that i’m able to help other kids and adults so remember when you used to feel nervous when you go out to places like how did that change for you i think that i’ve grown to be confident myself and to accept myself for who i am courtney is a very strong person you look at her from the outside and you see someone who’s so frail and broken in so many ways physically but on the inside there’s just a deep solid strength and confidence i think living with db is really difficult but i think that some good advice would be just to try to accept yourself as who you are and try to be comfortable with yourself and just to always have hope that um things will get better Video source: https://www.youtube.com/watch?v=0HdydmuRzk8
