EB
Info World
The Children with EB are called "Butterfly Children" because in spite of the extreme fragility of their skin (like a butterfly wing), that blisters at the slightest touch, they take on life and light it up with their bravery.
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- Recessive Dystrophic -
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We hope the pictures of these special children will touch your heart.
Scarring and milia are the hallmarks of dystrophic EB of both the dominant and recessive types. Recessive Dystrophic is particularly severe and mutilating. Large bullae present at birth and heal slowly, with a thick crust and scars. Fusion of the digits and mittenlike scars result encasing the hands and feet. Blistering of the oral mucosa, larynx, and eye may cause great disability as well. Nutrition is often a difficult problem, with poor intake and increased protein loss through the skin complicated by anemia and chronic constipation. Squamous Cell Carninoma (skin cancer) of the skin or mucosa are seen in early adulthood and are a common cause of death. Most patients with moderate to severe forms of Recessive Dystrophic EB rarely reach their 30th birthday, and can succumb from reasons as varied as severe anemia to heart failure. Please visit the EB memorial page to meet some of these patients that are no longer with us. The fragility of the skin is also explained by the observation that anchoring fibrils are decreased or absent in lesional and nonlesional skin in Recessive Dystrophic Epidermolysis Bullosa.
Dominant Dystrophic EB is generally milder than the recessive form. The Cockayne-Touraine type has predominant involvement of extensor skin surfaces and bony prominences. Presentation may be delayed until later infancy and childhood. Teeth are normal and nails may be dystrophic. Healing areas may become thickened and hypoplastic. The Pasini type also has extremity predominance, although it may be generalized. Scarlike albopapuloid lesions are characteristic in adolescence.
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Corey, Alex and Brandy
Siblings Brandy, Corey and Alex Coil, mom refers to them as the ABCs! Corey was born October 18, 1992, Brandy December 22, 1994, and Alex November 18, 1993. In this picture is also the K9 Oliver Coil, 9/3/04. All of them have the Recessive Dystrophic form of EB, the Hallopeau Siemens subtype, and they live in Grass Valley, California, with their adopted Mom, Lana Coil.
Corey was the
featured EB kid for December 1999.
Nicky
Nicholas Alexander Zahorcak was born November 25, 1996. He has the Recessive Dystrophic form of EB, the Hallopeau Siemens subtype, and lives in California with his family.
Nicky was the EBkid of the month for September 1999.
Click Here to go to Nicky's Home Page.
Catherine and Samantha
Catherine and Samantha Smith are identical twins, born November 8, 1997. They have the Recessive Dystrophic form of EB and live in Frankfort, Kentucky with mom, dad (Connie and Tony) and 5 older siblings.
Sarah
Sarah Isabel Oliveira was born on September 27, 1998. She has the Recessive Dystrophic form of EB and lives in Elizabeth, NJ with her mother, Maria and her big brother David.
Fallyn
Fallyn Raicheal Mcnamara was born on June 16th, 2002, she has the Recessive Dystrophic form of EB. The family lives in Irwin, Pennsylvania and it consists of dad Frank, Mom Cheryl, and older sisters Jennifer and Stephanie (8 and 5 as of 2005).
Aa'Leigha
Aa'Leigha Ashlon Parker was born with RDEB on 10/28/00 in Laurinburg, NC where she currently lives with her mommy Pam and younger sister Cidneigh.
Abdul Muqit
Abdul Muqit was born on July 31st, 2004. He has the Recessive Dystrophic form of EB. He lives in Bahawalpur, Pakistan along with his mother Nosheen and father Zahid. He is a playful and talkative child and likes to hear music and sing songs.
If your child has EB and you would like his or her photo on this page, please email Silvia...THANK YOU!!
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Last Updated: February 07, 2007
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