Epidermolysis Bullosa
"One day without crying, one day with no pain
One day of not suffering those blisters again.
One day with no dressings, or needles or creams
One day you 'll awaken with laughter not screams.
One day of not fearing the slightest tumble
And to watch you join in with your friends rough-and-tumble.
One day of not feeling great surges of guilt
For the genes that I gave you, imperfectly built.
One day of not having to turn a blind eye
To the ignorant stares of some passersby.
One day, in the future, a potion they 'll issue
To toughen your skin that 's as strong as wet tissue.
One day a complexion of peaches and cream
Will become a reality, not just a dream.
One day without crying, one day with no pain,
One day of not suffering those blisters again.
. . . one day"
This poem was published in the D.E.B.R.A. U.K. Autumn 1996 Newsletter. The poem was written by an anonymous mother of a child with Epidermolysis bullosa. This simple but well written poem conveys just some of the many emotions of what parents experience during the time coping with having a child that is cursed with this rare skin disease. Even though this is a rare disease there is a tremendous amount of knowledge pertaining to it and many researchers looking for a cure. This paper will cover a broad range of topics relating to Epidermolysis bullosa: what it is, who gets it, what causes it and what are the symptoms, how it 's detected, how it 's treated, how it can be prevented, and finally, what is the current research being done.
So just what is Epidermolysis bullosa? The skin is made up of many layers. The outer layer is called the epidermis while the inner layers are called the dermis. Bullosa means blister and lysis mean breakdown. Therefore Epidermolysis Bullosa means the breakdown and blistering of the skin. Epidermolysis bullosa, EB, is a group of inherited genetic skin disorders characterized by extremely fragile skin and formation of blisters. The blisters are not
One day of not suffering those blisters again.
One day with no dressings, or needles or creams
One day you 'll awaken with laughter not screams.
One day of not fearing the slightest tumble
And to watch you join in with your friends rough-and-tumble.
One day of not feeling great surges of guilt
For the genes that I gave you, imperfectly built.
One day of not having to turn a blind eye
To the ignorant stares of some passersby.
One day, in the future, a potion they 'll issue
To toughen your skin that 's as strong as wet tissue.
One day a complexion of peaches and cream
Will become a reality, not just a dream.
One day without crying, one day with no pain,
One day of not suffering those blisters again.
. . . one day"
This poem was published in the D.E.B.R.A. U.K. Autumn 1996 Newsletter. The poem was written by an anonymous mother of a child with Epidermolysis bullosa. This simple but well written poem conveys just some of the many emotions of what parents experience during the time coping with having a child that is cursed with this rare skin disease. Even though this is a rare disease there is a tremendous amount of knowledge pertaining to it and many researchers looking for a cure. This paper will cover a broad range of topics relating to Epidermolysis bullosa: what it is, who gets it, what causes it and what are the symptoms, how it 's detected, how it 's treated, how it can be prevented, and finally, what is the current research being done.
So just what is Epidermolysis bullosa? The skin is made up of many layers. The outer layer is called the epidermis while the inner layers are called the dermis. Bullosa means blister and lysis mean breakdown. Therefore Epidermolysis Bullosa means the breakdown and blistering of the skin. Epidermolysis bullosa, EB, is a group of inherited genetic skin disorders characterized by extremely fragile skin and formation of blisters. The blisters are not
Bibliography: DebRA. Dystrophic Epidermolysis Bullosa Research Association of America, Inc.. Retrieved March 21, 2006, from http://www.debra.org/. Epidermolysis Bullosa Medical Research Foundation. Retrieved February 15, 2006, from http://www.ebkids.org/ EB Info World. Sleeping Angel Creations & Services. Retrieved March 30, 2006, from http:// www.ebinfoworld.com/ Epidermolysis Bullosa. Madisons Foundation: Rare Pediatric Disease Database. Retrieved March 1, 2006, from http://www.madisonsfoundation.org/content/3/1/display.asp?did=408 Fallon Jr., L. Fleming MD, PhD, DrPH. (January 1, 2002). Gale Encyclopedia of Medicine: Epidermolysis Bullosa. Thomson Gale. National Institute of Arthritis and Musculoskeletal and Skin Diseases / National Institutes of Health. (June 2003) Questions and Answers about Epidermolysis Bullosa (NIH Publication No. 03-7038). Washington DC: Public Health Service Booklet. Moshell, Alan..McGuire, Joseph..Fine, Jo-David..Bauer, Eugene A. (May 1, 1999). Epidermolysis Bullosa: Clinical, Epideiological, and Laboratory Advances and the Findings of the National Epidermolysis Bullosa Registry. USA. The Johns Hopkins University Press.