The other day, for the umptheenth time, someone sent me a message telling me that… even though they knew nothing about EB, their “eczema” was healed through foods and supplements etc. I don’t even bother to respond anymore, I just delete it. To compare eczema to EB is preposterous. I like to keep my zen thinking that people should really learn about EB instead of giving me unsolicited advice. I laugh. That’s all I can do. I laugh.
I made the above meme, as I’ve made hundred others for EB awareness simply because EB is chaotic, loud, very, very messy, and exhausting. EB is genetic, no amount of food, creams, supplements, herb or other will stop the blistering, make the wounds disappear and more. My son’s body does not know HOW to make the collagen, no supplement is going to make his body produce it. No food will make Collagen VII magically appear. His body has rejected skin grafts with the Collagen VII in it. His immune system regards it as “foreign”. We don’t need quick-fix advice. We need lots of coffee and some laughs thrown in aside, of course, a CURE. A cure for my son at this point means changing the mutated ‘code’ in his DNA. No potion, herb, food can perform that amazing trick. Can they help a little? Sure. A little… maybe. At the end of the day, the EB is still there, and, yes, we’ve tried this, that and the other to no avail, other than my son’s becoming a guinea pig. Stanford, USC and others around the world are working on changing the “code”. It’s difficult, expensive and time consuming, but, truly, that is our only hope.
I understand people only want to help, but when you start your sentence with “I know nothing about EB but…” is not a good start. It’s not your job to offer suggestions or advice when someone is suffering from something you know nothing about. Unless we specifically ask for your feedback, assume we know everything there is to know and that we’ve chosen to handle things a specific way for a very good reason… Because unless you are raising a child with a very rare and unique disorder, you don’t know what it’s like to try everything. The countless appointments to doctors, counselors, and specialists is daunting. Will this diet change this wound? Did we find a supplement that works? Is the therapy making an impact? Do we have to medicate our child? The constant questions that bombards a mind is exhausting. The time, money and efforts of all, will it make a difference? As a mom of a child with a rare disorder, I live in a state of anxiety. I am constantly questioning whether I am doing all that I can. I have had public meltdowns (embarrassing), but the looks of disapproval are heartbreaking. Nobody knows the pressure parents are under every single day. There is no way they could know the painful cries of your heart.
Thank you for listening!
Love and Light,