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Through the years of running this website I've been asked questions about Epidermolysis Bullosa that follow in the category of misconceptions. People believing some things regarding this condition that are false. This is not only from strangers, friends and family, but from the medical community, as well as actual EB patients and parents. I've asked other parents and patients to give me their input of what the most common misconception about EB is that they have encountered and that is how I came up with this page. I add to it regularly when new misconceptions arise.

Here are the most common ones in an effort to educate everyone about EB. Please note... I am posting most of these questions verbatim, exactly as they were asked.

Q. Is EB caused by the parent in any way? By their use of illegal or legal drugs? By them using too much sweet-and-low in their coffee or anything of sort?

A. Epidermolysis Bullosa is a GENETIC condition, much like Down Syndrome, Cystic Fibrosis or Tourette Syndrome. The gene that causes EB was finally found in 1993. Before then there was a lot of speculation as stated in the question, and much fault was put on the parents. EB per se was first written about in the late 1800s, before then surely patients would die and nobody knew why. EB has been around FOREVER though, because it is an equal opportunity disorder, being equally present in ALL RACES and GENDER.  Parents have absolutely NO responsibility and are not ever to blame over how it manifests, as it is in our genes, much like we have blue eyes or blonde hair. 
In brief, some forms of EB, such as Recessive Dystrophic and any form of Junctional, are indeed a gene that is recessive and it only shows up if mom AND dad are both recessive carriers, healthy carriers. But the baby must inherit BOTH to have the condition. If he/she only inherits one he/she will be a healthy carrier like mom and dad. Hence two healthy carriers have a 25% chance of having a child with EB.
Dominant Dystrophic and Simplex are 'flukes' at conception, much like many other conditions, such as Trisomy 18, and once the patient has it, it is then a dominant condition, hence the patient has 50% of giving it to their children.

Q. Can antibiotics CURE EB?

A. EB is not an infection, it is a genetic defect. No antibiotic could cure EB, much like an antibiotic cannot cure Cystic Fibrosis or Down Syndrome.

Q. There must be a way to prevent EB, isn't? What precautions can parents take?

A. Because EB is not a disease, but a genetic defect, there is nothing that can truly be done to prevent it. In most cases, the parents are oblivious they are even carriers, and since the DNA is so tricky regarding this, they can't even be tested for it. In the cases where this is a 'fluke' at conception, well, that certainly can't be prevented.

Q. If the slightest touch hurts the skin, how come bandages don't?  I don't get what it means by "touch" or "contact."  How do EB patients lie in bed, sit down, hugged, carried, etc?

A. The answer is two-fold, because it really depends on the form of EB.

With Simplex EB, indeed bandages "might" cause more harm than good. The wounds are superficial after a slight bump, and bandages cause sweat that can cause more blisters. This, of course, if the wound is rather small. If a wound is large it may need to be bandaged anyway to promote healing. In simplex, and especially with babies, a small pressure of the skin will cause a blister, bandaging does not press the skin, hence does not usually cause blisters.

In RDEB (Recessive Dystrophic) the blisters are from friction, not pressure, hence the bandages actually help getting less blisters because they act like protection against the normal scratches and bumps that would tear up the skin immediately.

Patients can lie in bed, but they usually have to have very soft sheets or padding of some kind. Sitting is okay, but a lot of patients do need some extra padding on a hard chair. Patients can be hugged gently. Patients will need to be carried in a way that does not cause any kind of friction, absolutely NOT under the armpit for example, and more cradled like babies, without using hands but arms under the buttocks or legs.

Q. Do you use antibiotics all the time to treat infections?

A. Unfortunately if the body is given too many antibiotics all the time, such as bactroban, it can build a resistance to it. Hence it is vital to make sure the patients develops a strong immune system to fight infection on their own and not always rely on antibiotics of any kind. Antibiotics should be used sparingly and only if they are really needed to ensure that when they are indeed needed, they will WORK!

Q. Are EB blisters like rashes, red areas or sores of Eczema or Psoriasis patients? Is EB just perhaps a more severe form of these conditions?

A. No. EB blisters are indeed wounds, not rashes or sores. In the cases of RD they are second degree burn-like wounds-the kind they hospitalize people for. Eczema and Psoriases are NEVER, EVER to be confused with EB. Even in their extreme cases they are vastly different from EB, and never as serious. It needs to be understood that the blisters normal people get are not the kind of blisters that EB patients get. They are much, much more severe. The protein that acts as a glue between the layers of skin is not produced or not enough of, causing the skin to peel off. Leaving 2nd degree burn-like wounds on RD patients.

Q. Won't wrapping the hands cause children with EB to be very behind for their age group with using their hands?

A. The first thing to understand that is very important is that it is cruel to "expect" any child with EB with their fragile hands (and this is most especially for those children with the more severe forms of EB) to be able to do all the things a normal child does. I am not saying here to 'not let the children try things' (as I was accused), what I am saying is 'do not expect', big difference.  Their little hands hurt very easily, and they "might" (depending on severity) never be able to do even a fraction of what healthy children can do, so, as advice to parents, it's always suggested to throw out the window the notion that your child with severe EB can even remotely have normal hand use and to expect your child to be behind in this area. Having said this, things vary differently from form to form. With the more severe forms of EB it is more important for the child's hand to be protected and safe than worry about development-children WILL learn to do things, adapt and develop at their own pace and figure out a way to do things.
There will never be a need to wrap or protect the hand of a child with a mild form of EB at all (such as DDEB, Simplex and Junctional non-herlitz), but it is essential with severe forms, and especially so with the disfiguring form, which is Recessive Dystrophic. The hands of children with Recessive Dystrophic, if not wrapped, WILL web and contract, becoming unusable or close to it as time goes on, needing painful reconstructive hand surgeries to restore at least some function. Hence, with RD, the wrapping serves more than protection from wounds or covering wounds, it literally is a form of physical therapy, because by using slight pressure the fingers are kept apart and straight. The gauze also serves by giving the patient's fragile skin a little more strength in pulling and pushing.

Q. Do people need to keep their distance from EB patients so they won't catch it?

A. EB is not a disease or an illness like Chicken Pox or HIV. It cannot be 'caught' by being close to a patient, much like you cannot 'catch' Down Syndrome by hugging them or sharing a drink with them. EB is a birth defect, the defect lies in the DNA, in the genes. It is perfectly safe to hug and kiss an EB patient, EB is not contagious.

Q. How can twins be born one with EB and one without if EB is a genetic condition?

A. While that is true for identical twins (meaning, if one identical twin has the condition, the other one, by virtue of the DNA being identical, will have it as well), that is not always the case for fraternal twins. In fraternal twins it is very possible to have babies where one has a genetic condition like EB, and one not. Just like one baby can be born with down syndrome, and the fraternal twin be perfectly healthy. A recessive condition has a 25% chance of developing, and it's a roll of the dice each pregnancy/baby. 

Q. I saw on TV a show about a child with EB who got skin grafts and she is now basically cured! Why can't all patients get this skin graft?

A. Dateline NBC had a special in conjunction with People Magazine about Medical Miracles in the summer 2001 which has subsequently rerun on MSNBC on and off since then. The child that received this treatment, Tori Cameron, was the first EB child to receive a skin graft called Apligraf in an effort to heal her extensive wounds. Tori suffers from the Simplex, Dowling Meara form of EB, which can be quite severe at birth. Because she was the first patient to receive it, and it worked in closing her wounds, she made national news and appeared in shows such as Headline News, Extra and Dateline. Apligraf has since been used in many patients in an effort to close their wounds.
2 things are important to know:
1. Tori's form of EB dramatically improves with age regardless of any skin graft.
2. Apligraf only has about a 50% success rate, but all it does is close the wound, it does not cure EB, because skin grafts cannot alter the patient's DNA unless they are made to do that specifically. The patient can and will re-blister in the spot where the Apligraf was put eventually. Stanford is working on skin grafts which are made to specifically replace the patient's skin, and in that case they would indeed 'cure' that area where the skin graft will be put, but the treatment is several years away at best.
While the story on Dateline was great in awareness, we received several emails and hundreds of hits to this website subsequently from people erroneously thinking that if we just put Apligraf on all EB patients, the condition will disappear. Tori did get better, but all children with her form of EB improve dramatically anyway in the first years of life, and even more after puberty. Patients with other more severe forms of EB, such as Recessive Dystrophic or Junctional, while they can benefit from the Apligraf, if it takes, their condition will not improve at all.

Q. Does EB spontaneously appear at 3, 4 or 5 years of age? Could it be a side-effect from vaccinations? My girlfriend is 45. She says her EB showed up when she was 5 years old.

A. Patients are definitely born with EB. EB is a genetic disorder, and to say that it didn't "show up" until the patient was 5 years old is like saying that the baby was born healthy and then at 5 years old all of a sudden he/she had Down Syndrome! It just cannot be. Maybe your girlfriend was very mild before and then something triggered it to make it worse or does not have EB at all. No vaccination could ever cause this, unless vaccinations can now alter the DNA. The vast majority of patient's EB is diagnosed immediately or when it starts to show. In some babies it does not show right away because the baby still has some of mom's good fluids in its system. There is only one form of EB (aquisita) that all of a sudden shows up in later years (one documented case of the patient being in his 30s, usually it is much later, 60s+) when the body becomes weak and stops producing enough of the protein, but that is so rare I only have come in contact of one patient with it (and he yelled at me because I didn't have any info on his form of EB-actually I do, it's under 'dystrophic').  

Q. There must be a lotion or a cream that can heal that right up! I bet that products for sensitive skin would heal EB!

A. Creams and Lotions can help in the healing, but because this is a genetic defect, they will not get rid of the condition per se. EB cannot be cured by creams and lotions just like Sickle Cell Disease cannot be cured this way. Genetic Conditions can't be cured with any sort of cream unless they can alter the patient's DNA.

Q. Why does bleach in baths helps EB patients?

A. Bleach Baths help because they kill germs that cause infections. Especially those patients with the more severe kinds. Infection is the #1 killer of EB patients.

Q. If you starve a baby long enough, she will nurse or eat.

A. While this might be true for healthy children with no mouth involvement, children with EB of any form (yes, including Simplex!) can and will blister and have raw areas in their mouth, throat and esophagus making it extremely painful to eat. Doctors not familiar with EB have told parents not to force their babies to eat, that if they get hungry enough they would suck and swallow their milk. These babies are in too much pain to actually eat, and they can and will act hungry and will keep dropping weight. It is in these instances that a G-tube becomes a lifesaving option. The point is, don't starve your babies! Get help.

Q. I heard that a high protein diet causes blisters. Since EB patients need to be on high protein diets, could it be that that is the reason why they blister?

A. Patients lose so much blood and nutrients from their wounds, they need to get high protein from anywhere they can find. Supplements etc. Wounds can cover most of an RD patient's body, hence the body needs to make it up somehow. No high protein diet would ever cause any symptom that is anywhere close to what RDEB patients endure

Q. Don't Herbs and Plant treatments help cure EB?

A. During the time that it was not known what caused EB (before it became known that it is a genetic condition) patients were often treated and maltreated, put through every herb and plant treatment known. Nothing ever worked. Even as recently as the past couple of years people that do care came up with their own 'plant' and herb treatments and swore that the patients improved. Upon closer examination of pictures of the so called improvement of the patient or description, it became clear that the patients suffered from the Dowling Meara form of Simplex EB, a form of EB that improves with age regardless of herb or plant treatments of any kind. Whether herb or plant treatments can somewhat help EB symptoms has never been fully proved, surely they can't hurt, but it is an impossibility for these to cure EB unless they can alter the patient's DNA.

Q. Can EB disappear, I mean, completely disappear with age?

A. EB can't per se disappear, because the mutation lies in the genes. EB is not a virus or a disease, it's a genetic mutation, and the genes don't mutate by themselves. There is an extremely rare form of EB called 'transient of the newborn' where it does go away around the child's first birthday, but the patient's DNA is not altered per se, the child simply had a late start on producing the protein.

Q. There must be a typical diet for EB patients, isn't there?

A. There is no typical diet for EB patients, because every patient is different. Those whose mouth is sore with wounds can only eat usually mushy liquid fluids, those whose throat and esophagus is damaged, they get the tube. Most others can eat whatever they want.

Q. Why do patients get EB?

A. ... for the same reason why you have blue eyes or brown hair, or get Down Syndrome instead of Sickle Cell Disease, or why some women get Breast Cancer at 30 and some at 60, and some never get it. There is no rhyme or reason, sometimes is just bad luck, or something in the genes that is incorrect... every human being is a carrier of at least 7 potential gene defects lying dormant in their system, waiting to be passed on to the next generation. Some get lucky and don't pass it, some however...

Q. I bet there are no books about EB.

A. For books about EB go to this page: http://www.ebinfoworld.com/amazon.htm

Q. Do patients recover from EB?

A. There is no way anyone could ever recover from EB. Patients with the simplex form improve in the first years of life, and then again somewhat improve after puberty, but that's all. Think about it like this. Do your blue eyes turn brown later in life? Nop. That is because it's in the genes. Unless the DNA magically changes somewhat overnight or with time, it is impossible for a patient to lose their blue eyes like it's impossible for them to lose their EB or their Down Syndrome. As far as if the condition gets worse or improves with age, that depends on the form. Simplex improves with age, Recessive Dystrophic gets worse due to the constant breakdown of the skin and severe scarring. 

Q. Nobody cares about EB because is so rare, I bet there is no one looking for a cure.

A. Stanford is working on Gene Therapy for RDEB at the moment with success. So is a Dr in Italy. A potential cure for the Junctional Herlitz form is awaiting FDA approval and clinical trials. Click Here for the latest from Stanford.

Q. Does a skin area damaged by the EB get deep red and sore and itch and be hot to touch at one moment, and then maybe an hour later, be more faded, a more normal skin temperature, and maybe just itch a little?

A. A blister on an EB patient is a wound. Is not a red area that an hour later is more faded. A wound is a wound. And needs to be treated as such. On RD patients it's actually a second degree burn-like wound.

Q. Do all EB patients have Allergies?

A. Not all EB patients have allergies. It just depends if they are predisposed for it. I know many EB patients who are not allergic to anything, it just depends on their genetic make up like normal people.

Q. EB patients cannot be out in the sun, right? I bet they blister in the sun.

A. EB Patients do not sunburn easier or faster than anyone. However, a bad sunburn would be surely quite more painful and severe than for you and me.

Q. Why do EB parents continuously want to do hand surgeries to their RDEB children when adult RDEB patients say that all they want is their thumb? Why don't EB parents listen to the adult RDEB patients?

A. A big misconception is that EB parents don't or won't listen to adults with the condition. Nothing is further from the truth. I am yet to meet a parent that does not take the advice from an adult patient. When it comes to hand surgeries, the fact of the matter is, that most adult RDEB patients were not aware of the benefits of the wrapping until recently, and now do not have the time nor the energy to wrap the ABC way to keep the fingers intact, and since they never did this to begin with, they feel content to simply having a thumb. More often than not, most patients have told me they wished their parents had taken more care of their hands, that if their parents had taken care of their hands like I take care of Nicky's hands, they would have hands now... that they miss having hands... that they look at their baby pictures in nostalgia just seeing that they had hands once.  
Both times that my son had surgeries in his hands it was done because it was needed. On the right hand it was done when he was 2, and thanks to the ABC wrapping my son, 6 years later, still has fingers. Nobody can ever convince me that the combo surgery/abc wrapping is something wrong to do to my child. When he was two he would not even use that hand, and he is right handed. Now he uses it every day. The left hand was so gone by the time Nicky was 5 that he had no fingers left, they were incased in his palm. It was my son's decision to have the surgery, and now that he has a hand he's happy he's done the surgery when he did. If a 7 year old is happy about HIS decision, who is anyone to judge and criticize me? Unfortunately I get criticized for this all the time. Sigh. My take on this is... I make my son make the decisions, if he's happy with it, I am happy too.

Q. Why do patients die of EB?

A. EB patients don't die from EB. They die of infections, anemia, organs that are weak because of lack of nutrition or skin cancer. All of these are side-effects of EB.

Q. Are all forms of EB considered 'Lethal'?

A. Any condition that is labeled 'LETHAL' (also known as TERMINAL) implies that, upon diagnose, the patient will die from the condition sooner or later. The only two forms of EB that are considered LETHAL are Junctional-Herlitz and other Junctional forms (such as Pyloric Atresia) and RDEB. Junctional babies usually die before their first birthday, while RDEB patients live a painful life that can range from 0-30 years in most cases, although there have been patients that have lived longer. The causes vary, usually ranging from severe Anemia, Infection and Skin Cancer. Yes, other forms of EB 'can' be lethal too, but not by definition, as in the vast majority of cases the patient has a normal life span. Some old textbooks and Doctors will say that babies born with a rather severe form of EB Simplex called Dowling Meara have a 25% chance of dying their first year of life, but the validity of that statement has become questionable in recent years due to advances of antibiotics and wound care. The National EB Registry lists EBS-DM patients as having only a 1.44% chance of dying at any age. The link to that page is here.

Q. Why are parents so hung up on a cure? 

A. EB parents are NOT hung up on a cure. Yet this is what most adult patients think when the subject is brought up about the advances in gene therapy and stuff. Yes, we like to keep informed and see where the research is going, that does not mean we are "hung up" on a cure. We are accused of giving false hopes to our children when every parent I know has never promised such things to our children.  We are accused of just being awful when all we need, as parents of children with a lethal condition is just a little hope. Read my column about Hope here.

Q. I was told 15, 20, 25, 30, 35 (or more) years ago that a cure was just a few years away. I think the best thing for parents to do is not to put their hopes up on a cure because a cure will most likely not going to happen anytime soon and in their lifetime, since it hasn't happened in all these years.

A. It was SO INCREDIBLY WRONG for doctors to tell parents/patients all these years ago, that a cure was coming. Actually, I get pretty angry when I hear of any parent that was told a cure was coming in 'just a few years' back in the 60s, 70s and 80s. Let me tell you why:

1. The gene that causes EB was not discovered until 1993. Yes, 1993!!!! How can anyone be looking for a cure, if they didn't even know what gene caused the disorder? It makes no sense whatsoever.

2. The EBMRF, which is the sole monetary contributor to EB Research at Stanford, was only founded in 1991, there was no 'real' EB research done before then. When we took Nicky to Stanford and we talked to Dr. Marinkovich in early 1998, he stated to me quite clearly that at the moment they were not doing ANY research on RDEB at all, they were concentrating on Junctional. Real research for RDEB did not truly start until 1999/2000, so in all true senses, the real research for a cure for RDEB has only truly been worked on for 4-5 years at the very most. Anyone that tells you they worked on it before then they were... yes, lying.

I also get frustrated when people tell me "not to put my hopes up", because the only thing that keeps me smiling at my child on bad days, is the 'hope' that maybe, someday, something, anything, might help his condition. I am not even hoping for a full blown a cure at this point, just a way to ease it up a bit. Hope is what is all about, what makes me go from today to tomorrow at times. I even wrote a column about hope:
http://www.sleepingangel.com/smc_sep02.htm#hope

Q. All EB patients can die of Cancer?

A. Yes and No, it depends on the form. While there is only a minute chance of Simplex patients to develop Cancer (1 in 100 in their lifetime), with RDEB patients, in most cases, it is unfortunately not a matter of IF, but a matter of WHEN.
I found this very interesting page with Cancer in EB patients statistics you might want to check out: http://www.med.unc.edu/derm/nebr_site/cancer.htm
Basically, up to age 40, there are virtually NO instances of SCC (Squamous Cell Carcinoma) for EB patients unless they have RDEB. RDEB patients have a 6% chance of getting SCC at 20 years of age, 21% chance at 25 years of age, nearly 40% at 30 and 53% at 35. Even at 60 years of age, Junctional patients have never been reported statistically as getting SCC at all, simplex patients only have a minute chance of getting SCC, barely over 1%, DDEB patients almost 4% at 60 years age, but, in contrast, a 76% chance for RDEB patients.
As far as Malignant Melanoma, this is actually fairly rare to get, barely 1-2% by 55 years of age with all forms of EB except for Junctional, with a 0% instance.
For Basal Cell Carcinoma, they state that by 40 years of age < 1% of all patients with EB simplex and DDEB have experienced a BCC, higher with RDEB, with 4%.

Q. What is the medical explanation for some people with EB living to be 72 and others maybe only 10?

A. One word: severity. The patient that dies at 72 age has a much milder form of the condition than the 10 year old. It is also true that perhaps the 72 year old was much better cared for than the 10 year old. Perhaps the parents of the 10 year old were living in a poor country or were not aware of how to properly care for their child. It is all up for debate, however, in most cases, it is a case of severity.

Q. Do all EB patients have to have a G-tube?

A. Again, this depends on the form and severity of their form. Simplex rarely has problems in the mouth, but IT DOES HAPPEN! Most if not all Recessive Dystrophic patients, however, can and will blister everywhere... lips, tongue, gums, mouth, throat esophagus. Some patients may be able to eat enough by mouth (which is then usually mushy or liquid foods) and others cannot, that is why those patients might end up with a Gtube.

Q. I believe mouth blisters might not be from having EB, but from the dental fluoride treatment or the toothpaste with fluoride, or the children's multivitamin with fluoride, etc. Which the parent thinks is good for the child!

A. Fluoride could never cause the damage to EB children's mouths that I have witnessed. If so, any child with fluoride treatments would have their gums webbed, tongue adhered to the bottom of the mouth, and scarring in the esophagus, which, as we know, does not happen. Nicky was not on fluoride treatments when his mouth blistering started (at birth) and is not now, although he should, and he still blisters badly.

Q. I think that if EB patients could get laser treatments to 'burn the scars off', healthy skin would grow underneath!

A. I myself do not even know if the above statement would even work on a healthy patient, but even if it was true, and, for conversation's sake, let's say it is true and the scars would 'burn off' and healthy skin would grow underneath on a healthy patient and it was tried on an EB patient, even if the treatment would work, which is highly unlikely to begin with, the patient would still have EB after all is said and done. He/she would still get blisters and still scar. This is because EB is a genetic defect, and no laser treatment can cure EB unless it can magically alter the DNA of the EB patient.

Q. Instead of wrapping these children from head to toe, isn't better to dry out the wounds?

A. While that is possibly the preferred method with most children with simplex, very mild dystrophic and even some junctional non-herlitz patients, simply because the wounds are superficial and don't normally scar because they lie within the epidermis, or the wounds are few, letting the wounds dry with moderate to severe Dystrophic patients means they will scar and also cause deformities in the extremities. Wounds can also develop infections if air dried, and it has been observed that moderate to severe children with RD that are never wrapped have a much shorter life span because most of their little bodies are covered with scars. A scar is weak skin that can brake down much easier than an area that was properly healed, hence these children develop huge areas of weak skin that once breaks down will be open forever and have a high chance of developing nasty infections and even become cancerous in later years.
Bandages for RD patients serve many purposes: They allow for proper healing of wounds, they protect the healthy skin from braking down in the first place, and they allow the patient to do much more than without it. Most patients could not even walk without bandages on their feet. In areas where a bandage cannot be put, it is strongly recommended to keep the area moist by applying either zinc oxide 40% or Aquafor or any ointment twice a day to allow moisture to penetrate the wound and heal it properly.

Q. You publicly announced that you think unwrapping a child with RDEB borders on child abuse. You are entitled to your opinion - but what if you are wrong? What if there are other children out there who could benefit from unwrapping?

A. The person that wrote this to yours truly (your humble webmaster) took things out of context for one, and for two, I never 'publicly' announced anything, this was part of a discussion. For starters, my actual statement was that unwrapping a severe RDEB child borders on child abuse. There is a big difference between mild to moderate RDEB patients and severe patients. This is not an 'opinion' as she implies, it is something substantiated by not only the Debra Nurse, but Wound Care Specialists, Burn Unit Doctors and Nurses. 

RDEB wounds are 2nd degree burn-like wounds, they are not superficial. If healed without moisture they can and will scar, and will be prone to infections. Since infection is the #1 killer of EB patients, you can see why making sure wounds are protected and healed skin is covered to prevent new wounds important, and why leaving a child with these types of wounds unbandaged is simply unthinkable and, yes, bordering on child abuse. There was a case of two little boys with severe RDEB left unbandaged who were on the brink of death from infections and were taken away from the parents and given to a loving foster family who wrapped them and... they thrived! Think I am making this up? Their story is here. RDEB patients who are not as severe do not blister as easily. There is a mother who claims her child is 'severe' because she was given an RDEB-HS diagnose, that may be so, but there are differences of severity within each type, and since she posted pictures of her daughter with only a swimsuit on and no wounds in sight, there is no way she can ever convince me her child is severe. My son Nicky has never, ever had his body wound free in his whole life, he has wounds that haven't healed in years, and on his best days his wounds account to at least 30% of his body. It's important to remember that the more severe the patient is, the easier it is to get a wound, that's why protection from normal bumps and scratches from every day life is important for these severe patients. These patients do not benefit at all from unwrapping, as the area unbandaged is extremely easy to hurt.
But, once again, this is not my "opinion". Why take my word for it? 
Click on the following link to read more on why bandaging severe RDEB patients is vital:
-DebRA's Skin Care and Bandaging Page

Q. Aren't EB parents way overprotecting of their children?

A. Being "overprotective" is a gripe all children have, healthy or not. This is something, however, that children do end up understanding about their parents once the children become parents themselves. It is impossible to understand otherwise. I (the webmaster) for example, was never, ever allowed to have a sleep over growing up. Of course, at the time I thought my parents were 'way' overprotective, but since I've had children of my own, I've come to totally understand my parent's reasonings about this and other matters. 
EB patients that are not parents often complain to EB parents about this...  One time I was called 'evil' by an EB patient because I was taking precautions so my very severe and fragile EB child would not get hurt in kindergarten. None of my explanations to her how 4 and 5 years olds like to push, pull, kick, pinch, throw, step on and run into people, made her understand my point, a point that was backed up by my son's teacher, his aide, the school's nurse, the principal and it was even written in my son's IEP. Basically I told the kids on the first day at school that Nicky's skin was extremely fragile and they could not touch him unless it was to hug him. Now that Nicky's in third grade, my talk to the 8 and 9 year olds is quite different. I don't have to tell them not to touch him, because they understand when I tell them he's fragile and they don't feel like their kindergarten counterparts that they can kick him just a little bit, or push him just a little bit, they understand that fragile means fragile. Period.
We know our children like no one else can, and now that Nicky is old enough I ask for his opinion on things to be done to or for him 100% of the time. If he gives me the green light for something, I am certainly not going to subscribe to be called evil by anyone if they do not agree. Especially by someone who is not a parent. 

Q. People treat us (EB people) like we are so bad off & like we are paper and get hurt just by thinking about things to do... I bet my life that if we had people treating him (referring to a very severe RDEB patient) like everyone else.. like playing sports & doing what most kids do he wouldn't be so worse off right now.. I bet my life on that!! 

A. Severe RDEB children already have 50% or more open wounds on their bodies, and can barely walk nor WANT or CAN play basketball or any type of sport, how can anyone 'assume' they could be better off by doing these things it's totally ridiculous. If anything, instead of having 50% of their bodies covered in open wounds, it would be much worse, 75-90%.  If my son (who is 7 at the time I am writing this) was inclined to want to try sports, I would not stop him, but he has even refused a bicycle with training wheels and it took me a week to convince him that trying a tricycle would be fun!
To assume that parents don't treat or try to treat their kids as normal as possible is just plain rude, and, I am sorry to say, quite ignorant at the painful life these children lead and how fragile they really are.

Q. Is it common for those with RDEB to need diapers? If so may I ask the cause??

A. Many parents of severe RDEB children have many issues regarding toileting, and my Nicky is no different. Many children just can't walk to the toilet and/or may not be able to take their underwear down if they tried due to wounds on their hands or deformities. Others can't sit on the toilet due to many wounds on their bottom, others yet (and this is my son's problem) hold it in constantly because they are afraid of skin tearing in the anus. This is a psychological issue that many children with this problem have, and it may not be until they are almost teenagers that they can solve it, because they have to want to solve it themselves. No trying talks or bribes truly work. Children that get accustomed with holding poop in end up leaking poop all day long which makes it impossible for them to wear any underwear. The only way they'll go is if enough laxatives are given so they have no choice but go because it's basically liquid, which makes it even more impossible for them to wear underwear. The fact that RDEB children are anemic and we have to give them iron does not help either, since iron constipates. It's a losing battle and for many severe RDEB children diapers are the only answer...

Q. Why do some RDEB patients require blood transfusions and why are family Drs suggesting to have this done? In what ways does it help??

A. My Nicky's pediatrician referred him to a hematologist because Nicky had no energy and he had been severely anemic for a very long time. Nicky's hematologist is Dr. Coates, which spoke at the conference about EBers problems related to anemia. He is not only an expert hematologist, he is an expert in hematology and how it relates to EB. 

Nicky's blood count has been dangerously low for a long time, but recently were below borderline. Having a very low count means he's extremely anemic, which means that Nicky's life is in danger if nothing is done. A blood transfusion gives him some iron-rich blood plus trasferrin (sp?) which he is also missing. Transferrin is something the blood needs to have to absorb iron in foods and supplements and that somehow many severe RDEB patients lose after several years of bleeding through the wounds. After a couple of blood transfusions he started iron-transfusions which work better since his blood now has the trasferrin which  enables his blood to absorb the iron.

Most RDEBers have this problem and a few children have even died because of it... 

Q. For those w/ spontaneous mutations for the first time in the family, I am not totally convinced it isn't something in the environment. I understand that the recessive types occur when two people carry the gene and if you have a dominant type and pass that on as well... but I still don't understand how it could just occur out of the blue...?? Especially when there are other types out there you have to have/carry for your child to have it and its called the same thing? Are the other conditions that can occur spontaneously as well? 

A. There are a lot of conditions out there that are 'flukes' at conception, so many things can go wrong during conception I often wonder the wonder of nature of how many people are actually born healthy to be honest! LOL. But... I digress... 

A few years ago there was a group of Vietnam Vets that contacted me because many of them had children with Simplex, which as we know, it's a dominant condition and a fluke at conception. They thought there was something to it. We went back and forth for a while, and we never came back to a conclusion. It is possible. 

As per your question regarding how a condition that is a fluke at conception/dominant can be associated to a recessive condition that someone carries... the answer is actually quite simple. It's because of the nature of the beast. Even though they are two different beasts, they are associated because the symptoms are similar: Blistering. You have to remember that the word EB is just an 'umbrella' for various blistering conditions, something Doctors associated more than a hundred years ago. We often speak how Simplex is vastly different from Dystrophic and how Dystrophic is vastly different from Junctional etcetera, so different that they are treated quite different and the same type of products do not work from one form to another. They should not be listed with the same name (EB), but they are because it was something done before they even knew of all the differences. The word EB per se means the blistering of the epidermis, and if you think about it, it doesn't really fit the dystrophic forms because the blistering forms in the dermis, not in the epidermis! But, again at the time EB was named and all the forms associated, they weren't even aware of any differences, and now it's too late to change it!

Q. I saw a documentary about a man with EB and the narrator stated that he never went through puberty. Why is that? What causes it? Is this a common problem with EB patients?

A. It's important to understand that going through puberty requires a lot of calories and nutrition. In general, people who do not have much food to eat or are unable to eat much will have a delayed puberty or will not go through puberty at all, and this is the main reason why RDEB patients sometimes do not go through this stage of life. Why is that? RDEB patients have a scarred and strictured esophagus, and eating is always a big problem in general due to the mouth and throat being prone to easy blistering and painful sores. This is not the case for Simplex or Junctional patients, as their mouth, throat and esophagus is not normally damaged nor CAN get damaged to the extent that they cannot eat enough to sustain them. However, it is a HUGE problem for RDEB patients. My son Nicky, who is 8.5 years old as I write this, most likely would not be alive today without his g-tube and his constant throat dilatations to enlarge his esophagus that has been so closed up, the passing was only 1mm large. Because of the g-tube feedings now he is as big as a normal 8.5 year old would be and will most likely go through puberty without any problems. G-tubes have only been around for the past 15-20 years or so.

Q. I noticed that RDEB patients seem to have a discoloration of the skin. Why is that? 

A. The skin is not really discolored. Most RDEB patients are very anemic due to the heavy loss of blood through their wounds, and lack of iron in anyone's blood will make the skin look very pale. 

Q. Does EB effect the teeth, and if so, how?  Does it affect the gums? I was looking at a picture of a child with RDEB (Nicky) and noticed that the teeth looked different.

A. While some forms of EB (namely, Junctional) do effect the teeth, the form of EB Nicky has (RDEB) does not effect his teeth per se. However, the problem arises in the fact that he cannot brush his teeth like normal human beings. Brushing his teeth like we do will cause the skin of his gums to fall off and would be excruciatingly painful. That is why many RDEB patients do lose all their teeth eventually, simply because of the inability to clean them properly. Mouthwashes and other methods have worked a little, but never fully.

Q. I am reading a site called debra something or other. It says that eb is in the genes. Since I guess, most people that have this, know it, because it shows up right? It's not dormant, right? Why do you have children instead of adopting?

A. EB may be genetic, but that does not mean that all parents have the condition, nor that they automatically know they are carriers, as there is no such test. 
For those who have the dominant forms of EB, which are those forms (any form of Simplex and Dominant Dystrophic to be specific) where the parent has the condition (but not always-in certain cases the baby is a spontaneous mutation), the chances of the parent to give their condition to their child is 50/50. Since both the Simplex and Dominant Dystrophic forms of EB are, for the most part, milder than the Recessive forms, the choice to have a child and the chance of the child having the condition, is usually a very personal one. Many parents have stated that their quality of life was not greatly effected by the EB. Some with the Simplex forms know that their children will improve greatly with age, so they find solace in that. 
For those who have children with the recessive forms of EB, they do not have the condition, but they are carriers. There is no 'test' to find out if we are carriers, and they are none the wiser, as I was. The only way a child is born with a recessive form of EB (any form of Junctional and Recessive Dystrophic to be specific) is if *both* parents are healthy carriers. The birth of their child with EB is always a *surprise*. Two healthy carriers have a 25% chance of having a child with EB. Since these children are usually quite severe, and many die as babies, these parents for the most part do not chance another pregnancy, but now and again, very few do. Why? Most I've known are thinking that a 75% chance of having a healthy baby are very good odds, but, again, this is more the exception than the rule. Most parents that have another baby is by pure mistake, not by choice.
Why not adopt? As many people that know me personally would tell you, my long time dream is do adopt a little girl from those nasty orphanages in China. But, like an old Italian saying goes... "Between the 'saying' and the 'doing' there is an ocean in between", and this time is for real. I simply do not have the money, and many people have my same problem. Adoption is a very expensive option, one that many simply cannot afford.

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More Questions and Answers that were sent to us.

Q. Is it the type of shoes you wear that causes the blisters?

A. No, I can get the blisters while going barefooted. I have the Localized Simplex Weber-cockayne disorder. I get this question all of the time. ~Cindy

Q. I was scarred from burns all over my body. I went to a herbal doctor, and got on an herbal diet, and now my wounds are healed and I have little or no scarring. Can't you do that for your son who has DDEB?

A. This question was asked to me by someone in a courthouse who happened to see my son's DDEB from down the hall. Although herbal medicine, may help a little, it will not cure EB. Herbal medicine cannot change your genes. Since EB is a genetic defect, herbal medicine may help with healing, but will never CURE EB. ~Dawn

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