HWN Suggests

The Butterfly Effect

“Of all the skin conditions we see in dermatology, EB is the most completely debilitating and awful,” says Jean Tang, MD, PhD, an associate professor of dermatology... “If we could cure only one condition in this field, it would be EB, hands down. I don’t know any dermatologist who would answer differently. It’s hard for healthy people to realize just how important your skin is and how limited EB patients’ lives are.”

“There’s something about these patients and family members that is very unique,” says Tang. “They seem to have a unique ability to accept the condition, and move on to what needs to happen to live the best life possible. It’s sad, but also so inspirational. What is…

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Featured

  DEB Facts

Not all blisters are the same. Could yours be DEB? Ask your doctor about a genetic test for DEB.

 Epidermolysis Bullosa: Mothering a Butterfly Child

Children with EB are called “Butterfly Children” because their skin is so fragile, it can be compared to butterfly wings.

Articles of Interest

Butterfly disease: important lessons from a rare disease research

Butterfly disease has been called “the worst disease you’ve never heard of”. It’s an excruciatingly painful genetic condition that makes life miserable for the affected, and currently, there’s no cure. To make matters even worse, with as many as 27 different varieties of Epidermolysis bullosa (EB) and multiple genes/mutations, each patient is different, so there is no overarching, one-size-fits-all treatment solution.

Eleafar’s Story: Surviving Epidermolysis Bullosa

Eleafar’s journey began when he was born in Madison, Wisconsin. He was born without fingernails. And his skin, it would flake off like onionskin. He was diagnosed with epidermolysis bullosa, or EB, a genetic disease of the connective tissue that occurs in 1 in 50,000 children and causes blisters on the skin and in mucous membranes. Eleafar can blister and burn both inside and out.

Life with epidermolysis bullosa: “Pain is my reality, pain is my normal”

"Pain is my life. It's my reality. It's my normal." These are the words that haunted me for days after first watching this film about Paul Martinez, a 32-year-old Stanford patient with epidermolysis bullosa (EB). I'm used to being moved by films made by my colleague Mark Hanlon, but his latest effort, called "The Butterfly Effect," is about as powerful (and tear-inducing) as anything I've seen during my time here.

My Butterfly Baby

I wish I never had to learn about a disease so horrible it seems ripped from the pages of a horror novel. That is epidermolysis bullosa (EB). I knew nothing about it until 2009 when my son Jonah was born.

The worst disease you’ve never heard of: Stanford researchers and patients battle EB

My article "The Butterfly Effect" in the latest issue of Stanford Medicine magazine describes the toll of a devastating skin disease called epidermolysis bullosa on two young men and their families, as well as the determined efforts of a dedicated team of doctors and scientists to find a treatment.

Resources

debra

Since 1980, we've been dedicated to helping the EB Community. debra of America works to improve the lives of all people living with Epidermolysis Bullosa (EB) in the United States.

Cure EB

Cure EB (formerly Sohana Research Fund) is dedicated to finding effective treatments and a cure for Epidermolysis Bullosa. It was set up in 2011, by the parents of Sohana Collins, a young child with a severe form of the condition.

EB Research Partnership

EB Research Partnership is dedicated to finding a cure, and finding it quickly.

EBing a Mommy

Shortly after I delivered... before they came back to give me my baby. The pediatrician on call came in and told me that they were about 99% sure that our baby had a skin disease called "Epidermolysis Bullosa." Wow. Okay... we had NO CLUE what it was or in his case, how severe it was. I started to cry. Not even knowing what it would entail.

Epidermolysis Bullosa Medical Research Foundation

The Epidermolysis Bullosa Medical Research Foundation was established in 1991 by Gary & Lynn Fechser Anderson...

Epidermolysis Bullosa News

This site is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment.

Silvia's Kingdom

I am the mother of 3 boys, 2 in heaven, 1 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who was born with the Recessive Dystrophic form of Epidermolysis Bullosa. He died in late 2021.

DEBRA Canada

DEBRA Canada is a voluntary, registered charitable organization dedicated to providing support for families affected by Epidermolysis Bullosa (EB) and to increasing Canadians' awareness of this challenging disease.

DermNet

Epidermolysis bullosa (EB) is a group of inherited diseases that are characterised by blistering lesions on the skin and mucous membranes. These may occur anywhere on the body but most commonly appear at sites of friction and minor trauma such as the feet and hands.