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stellamarisetal /r/ehlersdanlos
7 points
1970-01-19 23:18:54.713 +0000 UTC

Something that will probably help you is a skin barrier product. It's usually sold in the form of a box of individual wipes in little packets, but I think some are gel in a bottle. The liquid in the wipe dries as a thin film on the skin, and the adhesive on your sticky pads/bandages sticks to that instead. I learned about it in an EDS group, and holy shit I wish I'd known about them for all my surgeries and hospital stays, and even for just wearing a bandaid/bandage of any kind for more than a day. I use the first one listed below (Coloplast), and they work really, really well. Now I always carry a few packets in my bag with me. My skin reacts to everything, so it seemed kind of miraculous when I first tried them. Some zebras also use the wipes under kinesiology tape so their skin doesn't freak out.

Of course you need these right now, so waiting for an amazon delivery to arrive would suck. I'm in the US and I've never seen them sold at drug stores, but if there's a medical supply store near you they might carry some (I'd call first). Or if your cardiologist is based out of a hospital, they should have barrier preps on hand, so you could likely go in and ask for a few. Hospitals always have them, and as zebras we should make sure our charts show that we need them for any/all bandages and adhesives. Even with that noted you'll likely have to remind the nurses often. But telling them that your skin can easily tear right off when the tape/bandages are pulled off tends to help them remember.

The brands most recommended by zebras are:

--Coloplast Prep Protective Skin Barrier (the original brand I believe) on Amazon

--3M Cavilon Skin Barrier (pricey) on Amazon

--There are plenty of much cheaper brands if you search for "skin barrier," but I only know for sure about the efficacy of the two noted above.

Hope you get some relief quickly. I'm probably going to be dealing with the same issue soon.