I have a question. how come when a person has RB it seems to only affect certain areas? like MOSTLY the hands for instance? do they know why? I think this has to be the worst disease ever for anyone to have to deal with. I can't wait till they find a cure i try to donate whenever i can. I know this is a stupid question but do you suffer with a lot of pain or does the skin because numb or senseless after a while?
@Lynnieburd i think it's the places you use the most, i don't have it but from all the use your hands get, they probably get damaged most by the disease
@kbagley01 Hey:) Jamie has a rare skin disease called EB (Epidermolysis Bullosa...yeah it's long) that causes the skin all over her body to blister. It is incredibly painful and can be life threatening. She does have fingers but they are covered in scar tissue. As a child her hands would blister and heal blister and heal so the scar tissue eventually formed over and around her fingers. All that sounds pretty bad...but she's the most amazing person ever. And she is the strongest person I know.
I have a question. how come when a person has RB it seems to only affect certain areas? like MOSTLY the hands for instance? do they know why? I think this has to be the worst disease ever for anyone to have to deal with. I can't wait till they find a cure i try to donate whenever i can. I know this is a stupid question but do you suffer with a lot of pain or does the skin because numb or senseless after a while?
Lynnieburd 1 year ago
@Lynnieburd i think it's the places you use the most, i don't have it but from all the use your hands get, they probably get damaged most by the disease
JazyGirl26 1 year ago
i looove your hat it's adorable
JazyGirl26 1 year ago
your so brave! i know how bad it hurts i have RDEB :( praying 4 you
MakeupCrazyArtist 1 year ago
Good luck girl. I hope all is going good for you.
hopedymond 1 year ago
what's wrong with ur hands? do u have fingers?
kbagley01 2 years ago
@kbagley01 Hey:) Jamie has a rare skin disease called EB (Epidermolysis Bullosa...yeah it's long) that causes the skin all over her body to blister. It is incredibly painful and can be life threatening. She does have fingers but they are covered in scar tissue. As a child her hands would blister and heal blister and heal so the scar tissue eventually formed over and around her fingers. All that sounds pretty bad...but she's the most amazing person ever. And she is the strongest person I know.
tayzlilkd 2 years ago
You deserve 6 chocolate buzz drinks! Extra large please! Thank you for sharing Jamie.
magicpez 2 years ago
Jamie you are SO SO Brave!!! Xxxxx
Beautybutterfly89 2 years ago