Information & Support
COLLECTIVE WISDOM FROM OUR COMMUNITY
Note that products and methods that work for one person may not work for another, but by reading these ideas you may benefit from the experience of others.
Please check with the EB Nurses if you are not sure whether a suggestion is right for the type of EB you have, or are caring for.
Pain-free washing - saline bathing
Washing a wound or graze ‘stings’, whether you have EB or not. Wetting raw wounded areas with ‘normal’ saline solution doesn’t sting at all, like magic it’s painless.
Normal saline solution is 0.9% salt (sodium chloride), that’s:
0.9 grams of salt / 100ml of water;
90 grams of salt (about half a cup) / 10 litres of water.
Find out more about saline bathing.
EB skin is not anchored down tightly. Unlike normal skin, EB blisters often swell and spread. From a blow that would normally cause a bruise, blood can pump EB skin off.
To undo the pressure and avoid this painful spreading it is best practice to lance EB blisters and gently drain the fluid. To avoid infection use a sterile needle or surgical blade and sterile gauze, keeping as much skin covering the wound as possible. Relief holes need to allow continued draining for when the blisters re-fill and gravity makes more skin come off. Puncture the areas that will be the bottom edge when sitting, standing and lying down. The ‘popping’ is painless if you slide the lance in parallel with skin at the edge of the blister and don’t touch the nerve bed below.
Some people find needle holes and lancet pricks in blisters heal over, letting the blister grow again – they prefer a 3mm cut with a surgical blade.
Re-graft ripped skin asap
It hurts while you do it but EB skin that has been torn off can be spread back out over the raw flesh within about 3 minutes of the injury and can re-adhere. The graft doesn’t hurt when back on and the injury heals rapidly. For major damage this seems to help avoid the body going into the sort of shock a serious burn can produce.
The blunt ends of sterile scalpel blades make an on-the-spot sterile implement for untangling and spreading out the scrunched up skin. Use one in each hand. You will find skin quite elastic, it stretches to fit. After about 3 minutes it won’t re-adhere if moved again.
Block pain signals: bite the bullet
The body’s nerves that transmit pain are a phone system wired like a tree back to the brain. If you put messages into this phone system upstream of the painful area, closer to the trunk then the line is already busy and the nerve phone system can’t transmit the hurt as clearly. Biting hard on something sends a priority call to the transmitters that shouts loudly making pain elsewhere much harder to hear.
Painful wounds, re-grafting, blister popping or bandaging can all be eased with careful pressure, holding, squeezing and tickling above / upstream of the wound.
A great emergency dressing that doesn’t stick to open wounds; cling film can protect against infection and stop the wounds stinging in open air. "Food safe" cling film is at least clean until you can use sterile dressings.
Cold stops healing
Wound healing can be paused for several hours when a wound is washed with cold water or chilled. Make sure liquids, saline, creams and bandages are warmed to body temperature before use. Keeping the bandage room warm is also important.
Johnson's pure cornstarch baby powder
For Simplex EB, cornstarch is recommend as a great preventive measure sprinkled liberally everywhere that might chafe, including between toes.
Comvita medihoney and wound care cream 18+
Honey, particularly manuka honey, has really good healing and antibacterial properties. Recommended for healing mild infections, wound care honey can work well on insect bites and with hard to heal wounds.
Do not use ordinary food grade honey on open wounds. Special wound care honey is treated to be safe. Occasionally honey can sting open wounds, so try a small area first.
Honey impregnated dressings
Use honey dressings for healing and antibacterial properties.
If using Hypafix or other gentle tapes to hold dressings in place, it can be easily and painlessly removed by dissolving the sticky stuff with either "remove-it" that comes in little sterile swab packets, or with a spray bottle of Dissolve-it from the hardware store.
Caution with the Dissolve-it spray though, because it’s easy to use too much, and it can cause a sensitivity to develop.
The adhesive remover Convactec made by Conva Care can also be used. It is a citrus based sachet-type wipe that is gentle on EB skin but make sure it is kept away from eyes.
Hema oil helps reduce the red areas on the skin after a wound heals. Best applied after a bath, it moisturises and has been used successfully to reduce itch. It is able to be used on very sensitive skin without irritation, and has a pleasant mild lavender smell. Find out more at www.hemaproducts.com.
Fresh and pure oils of other types can also be used to lubricate EB skin, including olive oil.
Drink lots of water
Some people with EB report they blister and damage less when they drink lots of water. Possibly the toughening effect is caused by hydrated body cells plumping up slightly and affecting the response to friction. High water intake also helps reduce constipation.
Additional nutrition, particularly protein and some elements like zinc, are important for healing skin wounds.
Burns wards use the rule of thumb of eating normally (100%) plus two times the % of the burn.
Someone recovering from a burn that is 25% surface area should eat 150% of a normal diet (100% + 2 x 25%).
Recovering from 50% burn, you would need to eat 200% of your normal food intake (100% + 2 x 50%).
People with severe EB often use liquid food supplements such as Fortisip and Ensure Plus. At the mega level of 200% of normal nutrition, they have more chance to repair skin and to grow and thrive.
Mashed potato, pasta, soups, and pulping the dinner in the blender all help make food smooth and easier to swallow when dealing with mouth blisters and throat constrictions. Add gravy, sauces, mayonnaise and/or soft grated cheese for extra flavour and calories.
Beware acidic food
Some people with Recessive Dystrophic EB report their skin seems more fragile if they have too many tomatoes or tomato sauce, orange juice, kiwi fruit or other acidic foods.
Got a hint to share?
Please send us your suggestions for helpful hints!