EB, yes, Epidermolysis Bullosa as it may, it’s probably one of the most misunderstood conditions out there. I wrote an extensive “Common Misconceptions” page long ago and even a long “FAQ page” for those with extensive questions about the disorder. These pages have been up on this website for over a decade, in an effort to shed the light on a condition that people have an extremely hard time understanding how it can be genetic.
Somehow it’s easy to understand how Down Syndrome or Cystic Fibrosis, for example, can be genetic. DS & CF families however, are never told they can cure their condition with food, herbs, or are told that either fluoride, aloe gel, gluten, a nutritional deficiency or a high protein diet can either ’cause’ their condition or… to my horror, claim they can vastly improve it or even ‘cure it’.
To add insult to injury, I was even asked once if EB is caused by the parent in any way… such as their use of illegal or legal drugs or by them using too much sweet-and-low in their coffee or anything of sort.
I am sorry to disappoint. The parent is not to blame, please stop blaming the parents, they did nothing. They were just unlucky enough to lose the genetic lottery. Yes, EB is genetic. It’s true! I am going to explain EB and keep it simple and concise.
There are three major ways a child can be born with EB:
1. Recessively: Recessive forms of EB include all forms of Junctional and Recessive Dystrophic. Both parents are carriers and they have a 25% chance of both passing their ‘faulty’ EB gene to the baby. (See image above)
2. Dominantly: Dominant forms of EB include all forms of Simplex and Dominant Dystrophic. One parent has the condition and it has a 50/50 chance to pass it on to their child. (See image above)
3. Spontaneous Mutation: EB also can be acquired through a spontaneous mutation. That is, a child is born with a dominant genetic mutation that causes EB, despite neither parent having EB. When this occurs, it is because the gene spontaneously mutated in either the sperm or the egg before conception. There is no scientific evidence that the parents could have prevented such spontaneous mutation, and there are no known environmental, dietary or behavioral triggers for this type of mutation. To this, I might note, years ago a Vietnam Veteran made a point to state that one of his children and a few of his friend’s children were born with Simplex EB, so there could ‘possibly’ be a correlation with Agent Orange or anything they might have been exposed while at war, but no real ’cause’ was ever found.
In an effort to be complete in my descriptions, I must note there is also an extremely rare form of EB called ‘Aquisita’ which is not inherited but associated with autoimmunity to type VII collagen and onset occurs only in adulthood.
Do I think things such as food, herbs, diets or anything of sort can help? Of course I do, choosing the right food, vitamins and the right diet helps everyone, with or without EB. However, the way they might or might not help prevent or heal wounds in EB patients, which are caused by the skin which is not produced correctly to begin with, is either minimal or marginal.
Before EB was found out to be genetic, I suppose it was a little more acceptable, perhaps slightly palatable, to think people could believe it would be cured with food. Dr. Kozak believed this wholeheartedly back in 1982 (read the article published in People Magazine here), he even had his own Klinik in Germany, where Lillian Sparks took her son Byron to (she described the whole treatment in her book “Parents Cry Too“), where every three to five hours (even in the middle of the night), nurses would wash patients’ skin with alcohol, then apply lotions and bandages and fed patients food with no preservatives, drink mineral water and took multiple vitamins. In her book, Lillian stated pretty much all Byron ate was carrot soup. Did this cure or either improve his EB? It couldn’t have and it didn’t. Food cannot correct genes. They may help heal, but cannot prevent blisters. To that I must say, any EB patient that is confined to a bed and has no life to speak of for 11 weeks will improve, end of story.
Thank You for listening and understanding.