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Life is difficult for toddlers and adults whose skin is so thin that even the slightest friction can cause it to rip. They're known as "butterfly children," and they suffer from epidermolysis bullosa, a group of inherited connective tissue illnesses in which the protein that holds skin in place isn't produced properly.

They are called "butterfly children" because the skin is as fragile as a butterfly's wings. They are also called "cotton wool babies" or "crystal skin children."

They are, however, not all children, and they are tougher than the typical butterfly.

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The Butterfly Skin Condition is diagnosed in approximately 20 per million live births, and 9 per million people in the general population have the disease.

Culture and society

Emma Fogarty, a campaigner for DEBRA Ireland (the Butterfly Skin Condition charity), received the People of the Year Award in 2010. Colin Farrell, an actor, has joined Fogarty in his fight against suffering.

Ryan Fullmer, whose son, Michael, was born with Butterfly Skin Condition, is a childhood friend of McCormick's. Heal EB was founded by Vedder, McCormick, and Ryan Fullmer, and his wife, Heather. The EB Research Partnership was formed in 2014 when Heal EB and the Jackson Gabriel Research Foundation united to form the EB Research Partnership. The EBRP holds various fundraising events each year.


As a result of minor trauma, epidermolysis bullosa is a series of disorders characterized by the production of blisters. In this disorder, over 300 mutations have been discovered. They've been divided into the following categories:

Epidermolysis bullosa simplex

Epidermolysis bullosa simplex (EBS) is a type of epidermolysis bullosa that creates blisters at the point of rubbing. It usually affects the hands and feet, and it's inherited autosomally dominantly, affecting the keratin genes KRT5 and KRT14. As a result, keratinisation fails, compromising the skin's integrity and its capacity to withstand mechanical pressures.

Junctional epidermolysis bullosa

JEB (junctional epidermolysis bullosa) is a hereditary condition that affects collagen and laminin. This condition is characterized by blister formation within the basement membrane zone's lamina lucida and is autosomal recessive in nature. It also causes blisters at the point of friction, particularly on the hands and feet, and can affect both children and adults. This type of EB is thought to affect fewer than one person in a million people.

Dystrophic epidermolysis bullosa

Dystrophic epidermolysis bullosa (DEB) is a genetic condition that affects the skin and other organs. DEB is caused by genetic errors (mutations) in the human COL7A1 gene, which codes for the type VII collagen protein (collagen VII). DEB mutations can be autosomal dominant or autosomal recessive in nature. Rare subtypes of this illness include epidermis bullosa pruriginosa and albopapuloid epidermolysis bullosa (Pasini's disease).


The epidermis is the outermost layer of the skin, and the dermis is the layer beneath it. Protein anchors (Dermo epidermal junction) exist between these two layers in healthy skin, preventing them from migrating independently of one another (shearing). The two skin layers in patients with EB lack the protein anchors that hold them together, resulting in highly fragile skin that can be separated by minor mechanical friction (such as rubbing or pressure) or trauma, resulting in blisters and painful sores. The sores have been described by EB sufferers as third-degree burns. Furthermore, as a result of the chronic skin damage, patients with EB have a higher chance of developing skin malignancies (cancers).


Either a skin (punch) biopsy at the margin of a wound with immunofluorescent mapping or a blood sample and genetic testing can be used to diagnose EB.


In a 2020 study, allogenic grafting of acellular dermal matrix/scaffolds was shown to be safe in EB patients without infection or necrosis, with fewer dressing changes, improved wound healing, pain reduction, and an overall improvement in the patients' quality of life.

Movies about Butterfly Skin Condition

The Boy Whose Skin Fell Off, a Channel 4 documentary about the life and death of Jonny Kennedy, an Englishman with EB, brought the condition to the attention of the general public in the UK in 2004. The HBO documentary My Flesh and Blood from 2003 could be regarded as similar in the United States.

In addition, Abigail Evans is followed by sickness in the film Butterfly Girl.

Jonathan Pitre's condition, treatment, and death were all covered extensively in Canada after The Sports Network's award-winning documentary on him aired.


The Epidermolysis Bullosa Disease Activity and Scarring Index (EBDASI) is a scoring system that measures the severity of EB in a scientific way. The EBDASI is a tool that physicians and patients can use to track the progression of their illness. It was also created to assess the effectiveness of novel medicines for the treatment of EB. Professor Dedee Murrell and her team of students and colleagues at the University of New South Wales' St George Hospital in Sydney developed and validated the EBDASI.


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