SSI help with epidermolysis Bullosa?

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My nephew has E.B. He just graduated and is trying to live out on his own. Trying to hold down a full time job has really highlighted the obstacles this disability puts in his path. Over the years, his parents provided no instruction, training or assistance of anykind for his E.B. and he is completely unprepared to have an independent life. I want to help him get all of the information, tools.skills and assistance he needs to be independent and have a good life.
It's hard to answer the question without knowing what type of EB your nephew has. I have EB simplex, so even though I get the blisters, I can hold down my job which is mostly sitting at a desk. If he has one of the more severe forms, holding down a job may be more difficult. Check out debra.org. It has alot of resourses for people with EB and those who love them.  (+ info)

My daughter has epidermolysis bullosa simplex. She's two years old.?

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for her age, i cant make her understand that it's a disorder that has no treatment or even medication. but whenever she develops blisters, she just cries so helplessly and she even asks me to give her medication to 'cure' the blisters ( she can speak well for her age). most of the times i'll just apply some baby lotions and lie to her that i'm applying medication and that'll help ease the pain. what's worse is sometimes she develops really big blisters. and when she gets them, she gets fever too. i dont know what's the connection, maybe she gets fever out of the pain. what can i do to help her ease the pain?

she took it after her daddy. he still gets blisters but he's a man.. im quite worried about my daughter because she often gets blisters around her waist area where there's pressure from the napkins and diapers. even a new pair of shoes causes blisters on her toes, etc.. i wonder how much of suffering she has to endure when she grows up and starts wearing undergarments and even sanitary pads..
That's certainly not common for EBsimplex to show up at such an early age, and in the areas that you've mentioned. Have you had a biopsy performed on either your daughter's or your husband's blisters? There are now numerous different types of epidermolysis bullosa (more than were appreciated in the past), and the underlying pathology is now understood much more than in the past. There is also a national support group, which has all the latest information. In addition, if the blisters keep your daughter from enjoying a normal, active childhood, you might want to look into sending her to camp Discovery in the summer, for fun activities with other kids who also have EB, etc. Check all of these out with your dermatologist.  (+ info)

does any1 here suffer from EB? (epidermolysis bullosa)?

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My son has it. Lots of info and groups on my website at ebinfoworld.com

Hugs!
Silvia  (+ info)

Our son had Epidermolysis Bullosa, how can we help him?????

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Our son is going to be 4 in August, and he has had EB since he was about 8 months old. At first they thought he had infintago, but it never went away so they did a skin biopsi on him and it turn out to be EB. He doent have it too badly, it just looks like he has alot of crash and burns on his knees, elbows, hands, toes and ears. Sometimes they will heal up, but then sooner or later they will all blister up and bust again and bleed. I can tell he is in pain. I feel so sorry for him, he is so tuff and strong. The only thing that i have found that works is baby Desitine, for a diaper rash, and only one bath a day. Is there anything else that I can do to help him clear them up??? And I was also reading from a site about death.. and some only live a little past thirtys. I am not going to out live my son am I?? I pray not. Please help our son Aiden.
I don't quite know how to answer your question. We have a son with Lamellar Ichthyosis which does not have the same implications as your son's conditions. Here are a couple of sites that might offer some assistance. You might also wish to try one of the Children's Hospitals - Chicago has one and the head of Dermatology is Dr. Amy Paller. I do not know if she can help or not. Good luck  (+ info)

Why are children with epidermis bullosa called butterfly children?

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This is because the condition causes the skin to be as fragile as (butterfly wings). They are also reffered to as Crystal Skin Children and Cotton Wool babies in other countries.

Here's an article about it.
http://en.wikipedia.org/wiki/Epidermolysis_bullosa  (+ info)

What is the difference between a disorder and a syndrome?

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I am doing a AP Biology presentation on the disorder known as EB (epidermolysis bullosa) and I was wondering how to classify it. My teacher is very specific. Thanks again!
A disorder is an abnormality that exists to disorganize a body system. A syndrome is a collection of symptoms that surround any given diagnosis. Example. Mental disorder is anything that destroys the cohesive functioning of the thought processes, etc. in the brain. Down's Syndrome is a group of characteristics that are genetically determined with a certain gene. In your study the entire skin dysfunction is called a disorder and the various skin signs are the syndrome.  (+ info)

which hospital in india and the others place will be good for the treatment of EBA skin disease.

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please provide me the hospital name where i can get the good treatment for EPIDERMOLYSIS BULLOSA (EBA) skin disease as soon as possible.
Amba Ayurveda Hospital, Andra Pradesh, Hyderabad

Epidermolysis bullosa acquisita (EBA) is an acquired bullous disease of the skin characterized by IgG autoantibodies against type VII (anchoring fibril) collagen.  (+ info)

what is angina bullosa haemorraghica?

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i got a blood blister on my pallate after an xray at the dentist and ive had them inside my cheeks before my dentist said it might be this medical condition ?
http://www.emedicine.com/derm/topic670.htm  (+ info)

SHould i use dovonex(cream) if i have epidormelys bullosa?

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idk but fungus is appearing in ma face idk why is it messin up ma face it feels very itchy..
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Does anyone know how to make a 2 3/4 yr old toddler calves thicker?

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She has a rare skin condition called Epidermolysis Bullosa (EB). She had to have her legs and most of her body heavily bandaged for the first year of her life. When she no longer needed to be bandaged up, it left her with extremely thin extremities. any suggestions would be appreciated.
Get a bouncing chair or mini trampoline....bouncing will enhance muscle growth and encourage swimming (use safety floats at first) as well.

They will ache as they grow, so be attentive by massages and maybe a bit of Ibuprofen if the pain is too bad.

Best wishes Mom!  (+ info)

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