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Doctor insights on: Dystrophic Epidermolysis Bullosa

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Can epidermolysis bullosa be totally cured?

Can epidermolysis bullosa be totally cured?

Unfortunately no: Eb can not be cured as it is a genetic condition. Several trials do occur that are looking at stem cell transplants as a method of increasing skin resistant to shearing forces and have shown promising results. http://www.debra.org/research-trials. ...Read more

Epidermolysis Bullosa (Definition)

There are many different types some with blisters some with severe scarring and almost ...Read more


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Does epidermolysis bullosa affect the nervous system?

Does epidermolysis bullosa affect the nervous system?

No: Epidermilysis bullosa is an inherited connective tissue disorder that affects connections or stickiness between the three layers of skin. It does not affect the nervous system and is restricted to skin of body and mucous membranes in your mouth and nose. ...Read more

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How do the doctors make the diagnosis for epidermolysis bullosa?

How do the doctors make the diagnosis for epidermolysis bullosa?

Clinical appearance.: Epidermolysis bullosa is a group of genetic conditions that cause the skin to be very fragile and to blister easily. There are 4 major types of eb simplex. It is an inherited condition. Blistering is present from birth and tends to improve with age. There is also abnormal nail growth and thickening of the palms and soles. As with most inherited diseases there is no definitive treatment. ...Read more

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Anyone familiar with revertant mosaicism and epidermolysis bullosa?

Anyone familiar with revertant mosaicism and epidermolysis bullosa?

Revertant Mosaiciam: Revertant mosaicism or natural gene therapy is the somatic reversion of an inherited mutation, thereby partially or completely restoring the phenotype. In eb this phenomenon is visible as clinically healthy patches, surrounded by affected skin. The underlying mechanism of reversion has been investigated in a cohort of nine patients. ...Read more

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I have epidermolysis bullosa, and I have a few questions for fellow sufferers or doctors out there?

OK, please ask!: This forum is suitable only for short question/short answer issues that must be general in nature, since no online consultant has the benefit of a detailed history or physical examination. A dermatologist would be the specialist to see for specifics. Please feel free to ask a question that may help you and others! ...Read more

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Is there SSI help with epidermolysis bullosa?

Is there SSI help with epidermolysis bullosa?

Yes: Epidermolysis bullosa has several different types and they differ in their severity. (ebs - eb simplex is the most common). These are all genetic skin fragility syndromes and will require life long wound care which is very expensive. I have some patients with this condition and have helped all of them get ssi assistance for their disease. Good luck. You should not have too much difficulty. ...Read more

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What is epidermolysis bullosa (eb)? What causes it?

Skin disease: It's a congenital skin disease. The skin has two layers the epidermis and the dermis below. In this disease the proteins that anchor the two don't work well so they don't adhere well and detach easily. This results in blistering and chronic erosions. There are different types some more serious than others. Here is a link to learn more: http://www.ebkids.org ...Read more

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How can we help our son with epidermolysis bullosa?

Support Group: Consider joining an epidermolysis bullosa support group where you can learn from other families that cope with this disease. Take care. ...Read more

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What is the definition or description of: epidermolysis bullosa?

Much: There are many different types some with blisters some with severe scarring and almost all types are inherited. ...Read more

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How is epidermolysis bullosa caused? What is being done by whom to cure this disease?

Gene defects: This rare disorder involves the loss of adhesion between top and bottom layers of skin caused by defects in the genes that control their constriction.It comes an dominant and recessive forms with many subtypes.Most involve the type 7 collagen gene. Many labs around the world have studied the problem and record >20k articles on the subject. See www.Ncbi.Nlm.Nih.Gov/gquery. ...Read more

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What to do if I discovered a video that have cured a baby with epidermolysis bullosa is is true or is it fake?

Fake: Epidermolysis bullosa is a genetic disease. Unfortunately there is no cure at this time although there is ongoing research. This is one disease where gene therapy may be helpful in the future. Any video claiming to cure this disease is fake and likely a scam to get your money. ...Read more

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Epidermolysis bullosa-simplex.Can anybody tell me about?

Epidermolysis bullosa-simplex.Can anybody tell me about?

Happy to.: Epidermolysis bullosa is a group of genetic conditions that cause the skin to be very fragile and to blister easily. There are 4 major types of eb simplex. It is an inherited condition. Blistering is present from birth and tends to improve with age. There is also abnormal nail growth and thickening of the palms and soles. As with most inherited diseases there is no definitive treatment. ...Read more

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What is Epidermolysis bullosa? How to cure it for a newborn? I read a new from Vietnam& see a new born hurting from it. Please help and suggest ?

EB: This is a group of genetically determined disorders of the skin. The type that presents at birth is transmitted by two unaffected parents that carry the gene. Those affected are treated with supportive care, but there is no cure.Most die of complications in the first year.Other forms onset later, are less aggressive & have differing genetic patterns. ...Read more

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My 14 month old son is now on methadone (.4mL) 2x's a day for pain due to epidermolysis bullosa. How will this affect him in the long run?

My 14 month old son is now on methadone (.4mL) 2x's a day for pain due to epidermolysis bullosa. How will this affect him in the long run?

Really no data: The only data on treating infants with methadone is in babies born to mom's who are on opiates, which is really a different population, with different problems. Most of those mom's also smoked through pregnancy, had lower birth weight babies, many had other psychosocial issues, as well as other drug/alcohol use. The good news is that in those babies, despite early delays, development ok at 3 y/o. ...Read more

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My daughter has epidermolysis bullosa simplex. She's two years old. Any suggestions for good care?

My daughter has epidermolysis bullosa simplex. She's two years old.  Any suggestions for good care?

Avoid harsh triggers: Do your best to avoid triggers for blistering, such as long walks, poorly fitting shoes, tight clothing etc. Also using soft cushions and padding on furniture should help minimize blistering. Depending on her clinical picture, other measures and medications may be put in place by your physician. ...Read more

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Saw a kid has epidermolysis bullosa, and all blisters over his body. He has to wrap himself with foodwrap to avoid the touch of skin. Anyone can help?

Saw a kid has epidermolysis bullosa, and all blisters over his body. He has to wrap himself with foodwrap to avoid the touch of skin. Anyone can help?

Blisters: There is no cure for eb. Treatment is symptomatic and the primary aim is to protect the skin and stop blister formation, promote healing and prevent complications. Because eb can affect so many different parts of the body, a team of medical specialists is usually required for overall care. When necessary, treatment with oral and topical medications may be prescribed by your doctor to assist healin. ...Read more

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Blisters inside rectal area. He has epidermolysis bullosa. Having a hard time pooping. Thoughts?

Blisters inside rectal area. He has epidermolysis bullosa. Having a hard time pooping. Thoughts?

Supportive care: Constipation causing straining or stretching of the skin around the anus could worsen this condition, so try to soften your son's stool by increasing fiber intake &/or giving prune or pear juice. When he stools, try to wash off and pat dry instead of wiping over the blisters, which could cause more irritation or bleeding. If signs of infection (redness, warmth, swelling, pus, fever), call Dr ASAP ...Read more

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I have hypokalemic periodic paralysis and a family history of malignant hypothermia as well as identical twin boys with epidermolysis bullosa simplex. Is it possible these could all be related?

I have hypokalemic periodic paralysis and a family history of malignant hypothermia as well as identical twin boys with epidermolysis bullosa simplex. Is it possible these could all be related?

Related: Possible. Genetic testing and counseling would be recommended --- more so with the malignant hypothermia - this is genetic and passed to kids. If they ever need surgery would be wise to know that with the twins. They are all inherited conditions. ...Read more

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