PRT 1: SCC Cancer in RDEB, before my surgery
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3:40
Fallyn's Story - Living with and overcoming RDEBby HelpFallyn5,023 views- 5:03
Garrett: The Boy Beneath The Bandages. WINNER of the Rare Disease Day 2010 Video Contest.by rarediseaseday19,365 views
- 9:08
EB- Butterfly Children #1by profilesincaring15,183 views
- 9:41
The Boy Whose Skin Fell Off (Jonny Kennedy) 3/5by 0utlook303,556 views
- 7:38
Eb - Butterfly Children #2by profilesincaring3,773 views
- 3:32
Amy O'Neill, Epidermolysis bullosaby ctruini7,683 views
- 11:55
iPS Stem Cell-Based Treatment of Epidermolysis Bullosaby CIRMTV548 views
- 5:37
ABBI'S STORYby raseperich16,098 views
- 4:57
A Crown for Kathrina | Pt. 6 of 6by SeattleChildrens18,245 views
- 7:39
From the Heart of a Parent (NILMDTS)by taz586947,326 views
- 4:35
Epidermolysis Bullosa -Mason Whiteby Laurentrent11113,634 views
- 3:44
Living with EBby DebRACharity8,612 views
- 2:39
Laser Surgery Removing a Skin Lesionby mdsanchez91,381 views
- 8:44
Monsie and Justin's Inspiring Love Story--Happy Valentines Dayby butterflyskyn571 views
- 6:37
After my dr visit--doctors don't read patients charts anymore?by butterflyskyn320 views
- 9:01
Butterflyskyn intro. Thank You Tax Payersby butterflyskyn656 views
- 6:17
My NEW Room! it's Periwinkle! Pretty!by butterflyskyn644 views
- 7:09
Alfred Lane, MD, discusses EB research and treatmentby PackardChildrensHosp6,661 views
- 5:36
Lorien Johnson Street Symphony Monicaby butterflyskyn753 views
@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 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
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
@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
what's wrong with ur hands? do u have fingers?
kbagley01 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