Epidermolysis Bullosa News
Boy with rare disease gets brand new skin with gene therapy
Doctors treating a critically ill boy with a rare skin disease use gene therapy to create an entirely new skin
Doctors replace boy’s skin using breakthrough gene therapy, stem cells
In a breakthrough treatment, researchers at a burn unit in Germany found a way to replace 80 percent of a boy’s skin using a combination of gene therapy and stem cells . The grafted skin attached to his body has continued to replace itself, even months later. The patient –- a boy who was 7 years
Community Wears Socks on Their Hands to Support Baby Born With Skin Disease
In a heartfelt gesture, one high school football team had their community "rocking socks" last week in support of a local baby with a rare skin disorder. “It's absolutely amazing," Liz Cadmus of Hauppauge, New York, told ABC News. "We're very, very blessed. It makes us believe in the fact that
Girl Raises $47,000 With Bracelets to Help Best Friend With Rare Disease
A 9-year-old girl has raised $47,000 by selling bracelets to get medical treatment for her best friend, who has a rare and dangerous skin disease . Bethany Walker started making small rubber bracelets in the hopes she could sell them for a few dollars and raise money to help her friend Anne Marie
Girl Raises Nearly $50,000 for Best Friend With Rare Skin Disease
Bethany Walker started selling bracelets to buy her friend Anne Marie a salt water therapy pool to soothe the blisters caused by Epidermolysis bullosa.
Baby Born With Rare 'Butterfly' Skin Condition
Brittany Weingart knew something was wrong with her son about a week after he was born when she found tiny blisters on his chin and mouth and couldn’t explain them. Baby Lane is now 6 months old, and doctors are almost certain he has a rare condition in which his body cannot properly make the
Obamacare Offers Hope for People With Rare Diseases
By Megan Barron Like many other young people, I celebrated the passage of the Affordable Care Act because it meant I could stay on my parents’ insurance until I was 26. But as a 22-year-old with epidermolysis bullosa, a rare condition that causes painful blistering...
Living with Epidermolysis Bullosa : Rare But Not Alone
By Megan Barron: There comes a point in every child’s life where they hit an age of self-awareness. They start to see themselves in relation to the world around them. For those of us who live with a rare disorder, that age of self-awareness is...
People with 'Butterfly' Skin Condition Triumph Through Pain
Life isn't easy for children and adults whose skin is so fragile that the tiniest friction can tear it away. They're called "butterfly children," and they have a range of genetic skin conditions called epidermolysis bullosa , which means they can't properly make the protein that anchors skin in
Louisiana Toddler Who Battled Disease Dies in Mother's Arms
Tripp Roth, Who Suffered From Junctional Epidermolysis Bullosa, Died Saturday