STOP!!!
PLEASE READ BEFORE TOUCHING ME!!
I have Epidermolysis Bullosa. It is a connective tissue disorder that causes fragile skin, internally and externally.
Here are the ways you can SAFELY care for me
If you have not worked with an EB patient before, please ask my parents how to care for me,
I CAN NOT have ANY tape, even paper or hypoallergenic tape used on my skin. Mepitac tape the ONLY safe tape that can be used on my skin.
A Blood Pressure Cuff MUST be used over clothing or bandages, otherwise the pressure will rip my skin
When taking blood, the tourniquets MUST be placed over clothing or bandages because the pressure will rip my skin. Blood draws may be difficult and can only be taken by an EXPERIENCED NICU nurse or while using IV radiology to find the best vein and avoid multiple sticks. Do not rub the skin with alcohol wipes. Gently dab the skin with an alcohol pad.
DO NOT slide me during bed transfers. Lift me by rolling me from side to side into your arms or let me parents show you how to move me.
For diaper changes, it usually takes two people. DO NOT grab my feet or ankles. Instead, one person should lift me with one arm under the back of my knees, and the other should change the diaper. DO NOT rub the skin with wipes. Use warm water to clean the area and gently pat dry.
Coat exam gloves and any tubing that comes into contact with the skin, externally and internally with a non-petroleum-based lubricant.
Temperatures CAN NOT be taken rectally or in the ear. Under the arm is the safest method, using a non-petroleum-based lubricant. Infrared Thermometers can also be used, but are not always accurate in EB patients due to temperature regulation issues.
PLEASE USE common sense and ask questions if you are unsure about my care.
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