Skin Like Butterfly Wings
December 21, 2009 § 8 Comments
Illustration by Neil Duerden.
I have done a lot of photo work in the skin ward the last weeks, and have encountered a lot of conditions I’ve never heard of before. One of the most horrible and strange is epidermolysis bullosa or EB.
EB is a rare inherited genetic disorder. It exists in many different forms and some types are more serious than others. Common to all types are that the connections between the layers of the skin (fibrils) are lacking or not functioning properly. Because of this the layers can move independently, and this causes friction and the formation of blisters and wounds from even the slightest pressure or trauma.
The wounds on a EB patient have a lot in common with burn wounds. EB that affects the upper layer of skin – the epidermis – causes wounds like a first-degree burn. They can heal without forming scar tissue. EB in the junction between the epidermis and the dermis causes wounds comparable to a second-degree burn, while EB of the dermis is the most serious type. Blisters form deep in the skin and causes wounds like a third-degree burn. They heal with scar tissue formation, and like on a burn victim, the scar tissue can constrict joints and cause fingers and toes to web.
EB patient with webbed hand.
I photographed patients with all types in the recent weeks. These people are born with the condition and live with it all their lives. Some of those with the most severe type don’t live long, because it also attacks the mucosa of the esophagus.
To end this on a more positive note – EB patient’s can get good care at specialized medical centers, like the hospital I’m working at. By documenting the wounds and blisters with photos we can aid in the mapping of the development of the disease, and how well the different measures the doctors take work.
I found this text on a Norwegian EB site. I don’t know who’s written it, but it says a lot about the condition in few words:
Imagine…
…a child with painful wounds similar to burns covering most of his or her body.
…having to wrap each tiny little infant finger with Vaseline gauze and then cover it with gauze to prevent the hand from scarring, webbing and contracting.
…never being able to hold your child tight because if you did, their skin would blister or shear off.
…a child who will never know what it’s like to run, skip or jump, or to play games with other children because even the slightest physical contact will injure his or her skin.
…a child who screams out each time it is bathed because the water touching its open wounds creates incredible pain.
…a diet of only liquids or soft foods because blistering and scarring occur in the esophagus.
…an active baby with his knees soaked in blood from the normal act of crawling.
…a teenager with stumps for hands, the affected fingers scarred/healed together.
The Sterile Eye 
The poem describes the condition so very well.
Do you have any experience with EB patients, Ramona?
Thank you for posting this info about EB. I am glad more people are hearing about this brutal and unforgiving skin disease.
Our son has Recessive Dystrophic EB. He is a miracle when it comes to this disease. His drive and spirit inspires me and keeps me going. He has us all baffled and he has taught us to keep moving forward, no matter what we were told.
Our guy is 9 years old now. He is as boyish as boys can be and lets nothing get in his way.
Thanks for reading my post!
Good luck with your little butterfly boy! I hope he’s doing fine.
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