Tyler Cross’ EB Journey
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Tyler has been living in the hospital for the last year and has been in hospital most of the last two years. His Stomach is/has basically shut down and had several surgeries to reconstruct his stomach and to place a G and J-tube. His G Tube has popped out due to built up pressure with the balloon still intact several times tearing his stomach and making the whole several times larger at this time there is no surgical solutions in sealing the whole or creating a new G Tube Site. He continues to seep stomach content out of the whole onto his skin which cause burning and erosion of the sounding outer skin on his stomach and lower back.
Tyler is living with what is probably by far, the worse disease you ever heard of called EB aka Butterfly Disease. Epidermolysis Bullosa (EB) is a group of rare inherited skin diseases that are characterized by the development of blisters following minimal pressure to the skin. Blistering often appears in infancy in response to simply being held or handled. In rarer forms of the disorder, EB can be life-threatening.
Tyler Suffers from the Recessive Dystrophic Epidermolysis Bullosa form of the Disease. Although in some cases this form of EB can be mild with generalized blistering, typically the recessive forms of EB tend to be more severe. Onset is usually at birth with areas of missing skin. Generalized blistering then scarring can occur on skin surfaces and mucous membranes. Scarring may limit range of motion of extremities. Fusion of fingers and toes and contractures cause deformity and loss of function. In some cases there is relatively mild blistering on hands, feet, elbows, and knees; these cases are very similar to dominant dystrophic EB. However, Recessive Dystrophic Epidermolysis Bullosa typically is characterized as follows: Blistering onset is at birth or soon afterwards. In some cases, nearly all skin surfaces and mucous membranes(from mouth to anus) are covered by blisters. Large areas may be devoid of skin. There is widespread scarring and deformity. Fingers and toes may become immobile. With recurrent scarring, fingers and/or toes may fuse together. Hands and arms may become fixed in a flexed position with resulting contractures. There is usually loss of the nails of the fingers and toes. Teeth may be malformed and delayed in appearing through the gums. Because routine dental care can raise blisters, many persons with RDEB have a higher than normal incidence of cavities. Blistering on the mucosal surfaces often cause scarring within the mouth and gastrointestinal tract. The ingestion of food may be limited due to micro-stomia (inability to fully open mouth due to scarring and contractures of the perioral region), painful swallowing, difficulty chewing,(due to poor dentition) esophageal webbing. In many cases chronic malnutrition, growth retardation and anemia may ensue. Involvement of the eyes can include eyelid inflammation with adhesions to the eyeball, as well as inflammation of the cornea or the conjunctiva (the mucous membrane covering the eyeball and the underside of the lids).
Tyler is living with what is probably by far, the worse disease you ever heard of called EB aka Butterfly Disease. Epidermolysis Bullosa (EB) is a group of rare inherited skin diseases that are characterized by the development of blisters following minimal pressure to the skin. Blistering often appears in infancy in response to simply being held or handled. In rarer forms of the disorder, EB can be life-threatening.
Tyler Suffers from the Recessive Dystrophic Epidermolysis Bullosa form of the Disease. Although in some cases this form of EB can be mild with generalized blistering, typically the recessive forms of EB tend to be more severe. Onset is usually at birth with areas of missing skin. Generalized blistering then scarring can occur on skin surfaces and mucous membranes. Scarring may limit range of motion of extremities. Fusion of fingers and toes and contractures cause deformity and loss of function. In some cases there is relatively mild blistering on hands, feet, elbows, and knees; these cases are very similar to dominant dystrophic EB. However, Recessive Dystrophic Epidermolysis Bullosa typically is characterized as follows: Blistering onset is at birth or soon afterwards. In some cases, nearly all skin surfaces and mucous membranes(from mouth to anus) are covered by blisters. Large areas may be devoid of skin. There is widespread scarring and deformity. Fingers and toes may become immobile. With recurrent scarring, fingers and/or toes may fuse together. Hands and arms may become fixed in a flexed position with resulting contractures. There is usually loss of the nails of the fingers and toes. Teeth may be malformed and delayed in appearing through the gums. Because routine dental care can raise blisters, many persons with RDEB have a higher than normal incidence of cavities. Blistering on the mucosal surfaces often cause scarring within the mouth and gastrointestinal tract. The ingestion of food may be limited due to micro-stomia (inability to fully open mouth due to scarring and contractures of the perioral region), painful swallowing, difficulty chewing,(due to poor dentition) esophageal webbing. In many cases chronic malnutrition, growth retardation and anemia may ensue. Involvement of the eyes can include eyelid inflammation with adhesions to the eyeball, as well as inflammation of the cornea or the conjunctiva (the mucous membrane covering the eyeball and the underside of the lids).
Organizer
Tyler Cross
Organizer
Corning, IA