{"id":594,"date":"2012-05-06T00:35:51","date_gmt":"2012-05-05T15:35:51","guid":{"rendered":"http:\/\/blog.ebinfoworld.com\/?page_id=594"},"modified":"2014-01-03T06:53:29","modified_gmt":"2014-01-02T21:53:29","slug":"eb-patients-photos-memorials","status":"publish","type":"page","link":"https:\/\/blog.ebinfoworld.com\/?page_id=594","title":{"rendered":"EB Patients’ Photos & Memorials"},"content":{"rendered":"
\"\"<\/a>

Nicholas Zahorcak<\/p><\/div>\n

 <\/p>\n

Epidermolysis Bullosa, also known as simply “EB”, is a term for a group of inherited disorders of skin manifested by fragility and the formation of blisters at site of mechanical trauma. It is caused by defects in any one of the genes that code for critical skin proteins.<\/p>\n

A number of different types of proteins, including collagen and keratin, are woven together to give skin its remarkably tough, yet flexible, properties. When any one of these proteins is bad, the weave is no good and the skin can literally fall apart with the slightest touch, causing painful blistering.<\/p>\n

There is a great range of severity depending of the type of EB, from occasional blisters that cause no appreciable disability to widespread blister formation with severe scarring, marked erosions, and contractures. In severe forms, lesions occur on any mucosal surface, including the mouth, gastrointestinal tract, and trachea, causing malnutrition, anemia and respiratory compromise.<\/p>\n

EB is rare. One thing to describe its rareness is that a doctor or a nurse can be working a lifetime and never bump into this condition. With modern medical care, some with the worse kinds of EB can live into their thirties. Unfortunately, by this age most will succumb to a particularly aggressive skin cancer (SCC: Squamous Cell Carcinoma) that is somehow touched off by EB. While SCC is notably a very slow moving cancer, on EB patients it is instead a very fast cancer.<\/p>\n

\"\"<\/a>

Samantha Sheridan with Lou Piniella<\/p><\/div>\n

There are three basic forms of EB:
\n~EB simplex<\/em> is the most superficial type, with splitting of the epidermis within the basal layer.
\n~Junctional EB<\/em> has splitting within the lamina lucida, at the junction of the epidermis and dermis.
\n~Dystrophic EB<\/em> has a split within the dermis below the lamina densa. Because of the dermal placement of the blister, lesions heal with scarring.<\/p>\n

Upon injury, the simplex’s wound is not as deep and severe as the dystrophic’s one, but it is more easily obtained.<\/p>\n

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.<\/p>\n

——————————————————————————–<\/p>\n

Don’t Be Afraid To Hug Me<\/strong><\/p>\n

Don’t be afraid to hug me.
\nDon’t be afraid to kiss me.
\nDon’t be afraid to snuggle with me as we sit and watch TV.
\nDon’t be afraid to give me “high five”.
\nDon’t be afraid to tickle me silly.
\nDon’t be afraid to shake my hand whenever you greet me.
\nDon’t be afraid to have fun with me.
\nParty and dance and watch movies.
\nDon’t be afraid to ask me questions
\nor be curious about my skin.
\nDon’t be afraid to get to know the person within.
\nDon’t be afraid to treat me as any other teen.
\nDon’t be afraid to spread the truth about my disease.
\nSo you can give me hugs and kisses,
\nshake my hand as we meet,
\nparty and dance with me,
\nand tickle my feet.
\nYou can ask me questions
\nand get to know me
\nand tell others about my disease.
\nBut there’s just one rule to follow,
\nAnd that’s be as gentle as can be
\nas you give me hugs
\nfull of love and not pity.<\/p>\n

Written By Cristina Perez in memory of Jennifer Johnson.<\/em><\/p>\n

——————————————————————————–<\/p>\n

EB patients live a tortured existence of daily pain and, in the more severe forms, such as Recessive Dystrophic, frequent medical procedures, with little hope of recovery or normalcy. Yet we must always remind ourselves that inside the disfigured body lives a child who wants to enjoy all the things in life a normal child enjoys, to play, to laugh, and to learn, a child with all the potential and need for joy of a normal child.<\/p>\n

Photos are grouped by form:<\/p>\n

~Simplex<\/a><\/strong><\/p>\n

~Junctional<\/a><\/strong><\/p>\n

~Dominant Dystrophic<\/a><\/strong><\/p>\n

~Recessive Dystrophic<\/a><\/strong><\/p>\n

~Memorials<\/a><\/strong><\/p>\n

——————————————————————————–<\/p>\n","protected":false},"excerpt":{"rendered":"

  Epidermolysis Bullosa, also known as simply “EB”, is a term for a group of inherited disorders of skin manifested by fragility and the formation of blisters at site of mechanical trauma. It is caused by defects in any one of the genes that code for critical skin proteins. A number of different types of…<\/p>\n

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