I feel the need to vent this morning, so thank you for letting me do that! OK, here goes.
A few months ago I posted a blog on the EB Info World website about the crazy notion that Every EB patient is different. I was inspired to write that blog when several well meaning young adults with the same form of EB my son has just could not understand why Nicky could not walk, why he was bandaged so much, and why his skin was different than theirs, even with the same diagnosis. That blog explained my experiences and understanding of how different each patient truly is.
Dismissing the fact that every EB patient is different and throwing parents once again under the bus was clear when an article appeared on a Tucson newspaper around Christmas. It entailed one family’s experience of un-bandaging their daughter and how well she was doing. They failed to mention that their child has a Simplex form of EB, one that notoriously does not need bandaging because the wounds are superficial and heal much better if air-dried. One adult with the same form of EB as my son, however, chimed in, stating that her skin as an adult “is much better off than others who were constantly bandaged“. (Because apparently she has seen each and every patient that has ever lived) She stated she used a number of natural cures which in her opinion helped dramatically. She further claimed she tried to share this with the EB community but “have found what I speak often falls on deaf ears because so many are so intent on being confident accepting everything at face value without every trying anything new.”
Don’t you just love how know-it-all this woman is? As if, because she has the same diagnosis as someone else, it means everyone’s skin will be absolutely identical to hers. I am YET to find another EB parent that does not try everything under the sun to help their children, so this comment about parents having ‘deaf ears’ offended me greatly.
All I can say to that is… Pffft.
Apples and Oranges, I tell you, Apples and Oranges! It’s Apples and Oranges on Nicky’s own skin for goodness sakes! Some areas of his body, when hit, don’t even blister, they bruise! Some areas don’t need to be wrapped at all, some just must be wrapped, at least lightly, some areas need thick wrap and that’s how it is.
Let me go on record on saying, I tried every natural cure known to man. Supplements, oils, powders, shakes, you name it, I tried it. I’ve had people send me stuff from India, from Japan, we lived in Italy for a time when Nicky was little and we tried so many things… oils, creams, medications etc. Even in 2007 I used to give Nicky baths in Tea because someone stated it helped! I tried pads under Nicky’s feet because they ‘absorbed bad energy’ and every stupid crazy thing you can imagine. This woman is fortunate that whatever she is trying works for her, but to not bandage Nicky at this point, would be a death sentence. I don’t like bandages, I don’t like to spend at least 2 hours every day covering wounds, but, in Nicky’s case, I really have no choice. His wounds MUST be wrapped. Period.
Recently Nicky got a wound on his stomach, in an area that it’s hard to bandage, so, we just air-dried it. A few days later there was a thick, yucky scab all over it. When Nicky pressed it, it OOZED green slime. It was absolutely DISGUSTING! Nicky almost threw up. I covered it with topical antibiotic ointment (which I rarely use so it will work when I do use it), and topped it with Xeroform and Mepilex. 48 hours later we took it off and it looked wonderful. Scab gone, area clean. Not only that-the skin that heals while air-dried, never heals nicely, never. It leaves behind a nasty scar, this translucent skin that is extremely easy to re-hurt. When we heal a wound with moisture instead, the skin goes back to its natural look and state. I mean, considering how extremely easily my son blisters, the fact that his Doctor yesterday told me he looked amazing compared to all the other RDEB kids in his care tells me I am doing “something” right. After all, keeping his body wound free means I also keep his body infection and cancer free.
That’s all I have to say. EB is a crazy monster. Different forms of EB are so different from each other I often wonder why they are all called the same. They are not the same. Forget Apples & Oranges, the difference between Simplex/Junctional/Dystrophic is like comparing fruit/vegetables/meat. They ONLY thing they have in common is that they blister. And then within each form the difference in severity is beyond huge. To compare and judge one another is not only wrong, but potentially fatal.
Do what works for YOU. Be open minded, but do not judge. Please.
Thank You for listening,
Love & Light,
