Does anyone out there have epidermolysis bullosa? If so do you have a good dentist...have dentures? I'm 54...
not many teeth left, getting desperate
Why not try the EB support group, you may get more luck there; (+ info
HAS ANYONE HEARD OF Epidermolysis Bullosa ?
MY BEAUTIFUL NEPHEW HAS THIS HORRIBLE GENETIC SKIN DISORDER...click on the link to find out more information
Epidermolysis bullosa is just one in a group of blistering skin conditions. The skin is so fragile in people with epidermolysis bullosa that even minor rubbing may cause blistering. At times, the person may not be aware of rubbing or injuring the skin even though blisters develop. In severe epidermolysis bullosa, blisters are not confined to the outer skin. They may develop inside the body, in such places as the linings of the mouth, esophagus, stomach, intestines, upper airway, bladder, and the genitals. Most forms of epidermolysis bullosa are evident at birth. This disorder can be both disabling and disfiguring, and some forms may lead to early death. The disease results when skin layers separate after minor trauma. Defects of several proteins within the skin are at fault.
To pick up a baby with severe epidermolysis bullosa, place the child on a soft material and support the under the buttocks (bottom) and behind the neck. A baby with epidermolysis bullosa should never be picked up under the arms. To protect the skin from injury, avoid overheating by keeping rooms at an even temperature, apply lubricants to the skin to reduce friction and keep the skin moist, use simple, soft clothing that requires minimal handling when dressing a child, use sheepskin on car seats and other hard surfaces, and put mittens on at bedtime to help prevent scratching. When blisters appear, the objectives of care are to reduce pain or discomfort, prevent excessive loss of body fluid, promote healing, and prevent infection. If infection appears, it should be promptly treated. (+ info
SSI help with epidermolysis Bullosa?
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
does any1 here suffer from EB? (epidermolysis bullosa)?
My son has it. Lots of info and groups on my website at ebinfoworld.com
Silvia (+ info
Our son had Epidermolysis Bullosa, how can we help him?????
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
What does it mean if I was exposed to herpes simplex virus?
I just got checked for STDs and I was clean except for I was "exposed to herpes 1, simplex virus". I know that this simplex virus thingy is just cold sores. But what does it mean?
Being exposed to it usually means that you have come into contact with some one that has it the virus. It can also mean that you have it. Cold sores can be passed on during child hood by being innocently kissed by some one that has cold sores.50-80 percent f the population has cold sores and HSV1 is not considered to be an std, because you can get them with out having sex. (+ info
Can the herpes simplex virus be spread when there is not an outbreak?
My boyfriend gets cold sores but only occasionally. Can he pass them to me even if he does not have one at the time? In other words, is the herpes simplex virus contagious if there is not outbreak of cold sores? Thanks!
My boyfriend would always get cold sores on his lips and i never knew they were herpes i was only 16 and very naive. The first and only time that he performed oral sex, I got genital herpes and he didn't even have an outbreak!! I then later found out that herpes can be spread with or without any signs or symptoms. Since then I have also developed herpes simplex keratitis (herpes inside my eye) and will one day need a cornea transplant. Its a very scary virus that will stay with you for your entire life, there is no cure and even with the medication I still get horrible painful outbreaks. Good luck and i really hope your boyfriend is taking precautions. (+ info
What is the classification of herpes simplex?
Okay, so can someone give me a website with the information with the classification of herpes simplex on it? I've been trying to look for one, but have had no luck.
I need the type of bacterium (gram positive/negative, shape, etc.)
type of virus (DNA, RNA, etc.)
or other parasites.
do you know of a website that has any of this?
that would be a lot of help. thank you!
wikipedia (+ info
Can herpes simplex 2 be transferred by kissing?
I am not to worried about herpes simplex 1. However I have heard that herpes simplex 2 can affect the mouth. Can you be affected by kissing someone who has herpes simplex 2?
Yes, it's highly transferable. (+ info
If i have herpes simplex 1 and i have oral sex with my boyfreind is he likely to contract genital herpes?
I was just wondering if it is very likely that if i have herpes simplex 1, (cold sores) if my boyfreind would contract genital herpes during oral sex. If so, would it be where he could give it back to me, and if we had a baby it would be deformed?
Senaste uppdateringen: September 2014