Apparently the past 18 years I had my head completely in the sand. The cure for EB was in my cupboard! Who knew? Instead of putting fancy creams, or high tech bandaging and wound healing products, I should have just covered Nicky’s wounds with potato skins and cooked onions and mushed them up good enough to go into his g-tube and… woop, bye-bye EB.
If only it was so simple.
I am not sure why, over the years, explaining EB has been such a struggle. I know everyone means well, but… think about it for a moment. Really think. Would you tell someone with, say, Down Syndrome, to eat a certain thing to make their diagnosis go away? When you’re dealing with a genetic condition, no matter what you do, the problem remains. Yes, different products help in the “healing” of the wounds, but the cause of the blisters, the inherent genetic defect, remains. The only thing that can truly help someone with EB is eliminating the source of the blistering, fixing the DNA.
This is no easy task by any stretch of the imagination. Changing the DNA. I assure you that if I could cook up onions or if potato skins helped, Stanford or Minnesota and whoever else is researching a real cure, would have come up with this a long time ago. As a matter of fact, over the years I experimented with enough products on Nicky that I could fill a whole book about it. In the end, my research is only good for my son though, as each patient is very different.
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.