What’s EB?

A child with Epidermolysis Bullosa (EB) is afflicted with a type of inherited skin disorder that causes blisters after even the mildest trauma. Most commonly, EB causes blisters on the skin, but EB can also affect the mouth, esophagus, lungs, muscles, eyes, nails and teeth. Depending on the type of EB, the effects of the disease can be mild, disabling, or life threatening. EB is never contagious because it is a genetic disease.

There are three types of EB, all caused by a different genetic mutation: EB simplex (EBS), Junctional EB (JEB) and Dystrophic EB (DEB). EB simplex is the mildest and most common form of EB, while Junctional EB and Dystrophic EB are relatively less common and affect the patient more severely.

There are three major sub-types of Junctional EB. Herlitz, non-Herlitz and Junctional EB with associated Pyloric Atresia.

Herlitz JEB is the more severe form of the condition. From birth or early infancy, affected individuals have blistering over large regions of the body. Blistering also affects the mucous membranes, such as the moist lining of the mouth and digestive tract, which can make it difficult to eat and digest food. As a result, many affected children have chronic malnutrition and slow growth. The extensive blistering leads to scarring and the formation of red, bumpy patches called granulation tissue. Granulation tissue bleeds easily and profusely, making affected infants susceptible to serious infections and loss of necessary proteins, minerals, and fluids. Additionally, a buildup of granulation tissue in the airway can lead to a weak, hoarse cry and difficulty breathing.
Other complications of Herlitz JEB can include fusion of the fingers and toes, abnormalities of the fingernails and toenails, joint deformities (contractures) that restrict movement, and hair loss (alopecia). Because the signs and symptoms of Herlitz JEB are so severe, infants with this condition usually do not survive beyond the first year of life.

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16 thoughts on “What’s EB?

  1. I am so sorry to hear about your son’a condition. My family + I have prayers sent your way. I know The Lord has a plan for that sweet baby boy. God bless you and your family. Keep faith and remember Jeremiah 29:11

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  2. I am praying for your family and your son to be free of any pain , He is in God’s hands although we don’t understaND why these things happen we have to keep trusting him. I pray for peace and strength for your family.

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  3. I am beyond moved by you’d story. May you find faith and strength during this difficult time. Your gorgeous baby boy is a fighter and I will have him in my prayer!

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  4. I have faith that by early next week the doctors will be announcing Ethan’s road to recovery and all plans for his future treatments and care will progress . Nothing ever falls short with the grace of our Lord Savior. I will keep baby Ethan and your entire family in my prayers as I anxiously await the announcement of his miraculous recovery🙏

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  5. Hi. My name is Lori. My husband, his brother, mother and my brother in law son has an EB. My husband get lots of blister the worst in summer.
    You and your family are very strong. I pray for you and your family that your son gonna get better.:-)

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  6. I was completely touched by your strength as a mother & father to stay strong for your beautiful little boy. Baby Ethan is definitely a strong baby boy who has the will to survive. I send prayers out to you & your family.

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  7. My respects for you as a mother to have so much strength my family has gone threw the same experience. & its so heartbreaking to know that you cant do much for our babies . My little brother was in lucile packard childrens hospital at standford and was there for month with a horrible disease called kawasaki and developed really fast that we almost lost him as a 2 year old boy . My prayers for your little angel faith is the key .

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  8. My prayers go out to Ethan !! All these struggles hes going through right now will be over at the end you and your family will have the Victory just hace faith 💙

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  9. My heart goes out to your family
    Your story really touched my heart ,
    your a strong women and I know it must me hard
    But hang in there ,I just recently had a baby and he had
    To go though surgery and that was killing
    So I can imagine the pain your going through
    Keep bring strong like you are

    His is a handsome baby boy you should be proud

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  10. As a mom I can only cry, your journey for the hope of your son recovery must have been so hard. I would cry every second if I saw my son going thru so many machines but you held your head up & you’re an inspiration to all mother out there that even the most precious thing to us such as our kids have past away from us there’s always hope for the future & we must always think that. Even though poor baby Ethan was in so much pain, he is no longer in those circumstances & that Jehovah will resurrect you’re son when he puts all the suffering to an end. (2 Corinthians 1:3,4 3 “Praised be the God and Father of our Lord Jesus Christ, the Father of tender mercies and the God of all comfort, 4 who comforts us in all our trials so that we may be able to comfort others in any sort of trial with the comfort that we receive from God.”) (Revelation 21:4 “4 And he will wipe out every tear from their eyes, and death will be no more, neither will mourning nor outcry nor pain be anymore. The former things have passed away.”)
    May Jehovah bless your family.

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