EB In the News

Parents of a Corona boy with fatal genetic disorder have new hope

Circumcision and EB

As the EB Nurse web site states:

"Circumcision is frequently an area of concern for families when their son has an EB diagnosis.

If the parents were planning to have their son circumcised, the fact that he has EB should not change the decision. The NEBR (National EB Registry) data suggests that,
within the study population, circumcision was preformed within all subtypes of EB and none of these study participants reported excessively poor or delayed healing."

Personal experience:  we had Joey circumcised when he was 2 days old and he had no problems with the procedure or any complications afterward and healed with a normal amount of time compared to babies without EB. 

Walk for Carson

The third annual Walk for EB (Epidermolysis Bullosa) will take place on Saturday, May 1 at Heritage Park, 11405 E. Miami River Road in Colerain Township.

EB Walk for Carson

EB In the News

Friday fund-raiser for boy who's 

always in bandages

 Click here to read the story

Wound Care Products- page 2

Xeroform Gauze is a 3% Bismuth Tribromophenate in a special petrolatum blend on fine mesh gauze. It is non-adherent and clings and conforms to all body contours.
It has bacteriostatic action and is sterile.

It is not for use on infants under one year of age.

 WEBRIL 100% Cotton Undercast Padding is a soft fuffly padding that many with EB use over the dressings and under the gauze or stretch netting to add a little more protection to the skin.

It can also be used under blood pressure cuff to prevent damage to the skin

 

Vaseline gauze is a contact layer that does directly on top of a wound

Vaseline Gauze is a  fine mesh, absorbent gauze impregnated with white petrolatum.   It is non-adherent
and clings and conforms to all body contours.

The petrolatum impregnant remains moist-nontoxic, nonsensitizing and non-irritating and is sterile.

 

The features of TELFA Ouchless Non-Adherent Dressings :

-Absorbent cotton pad.
-Superior "Ouchless" TELFA dressing won't disrupt healing tissue by stick to wound.
-Each sterile dressing individually wrapped in peel-open envelope.
-Ideal as primary dressing for lightly draining wounds.
-Bonded on both sides with perforated non-adherent film; can be cut to fit any shape without separating.
-Easy to use; an ideal take home dressing

Many used rolled conforming gauze to hold the dressings in place. There are many brands and types of gauze, but the three most popular used by EB patients are:

Conco Conforming Gauze

Conform gauze by Kendell

Elastomull Elastic Gauze Bandage

They come in assortment of sizes ranging from 1" to 6". 

Here are the Mepilex Application Guides.  It can also be used as a guide for other products as well.

Tubifast is a lightweight elasticated tubular bandage.  It stretches and conforms to the body holding the dressing in place.  It comes in many sizes and now they have even come up with Tubifast garments.  For more information including how to order, the application of Tubifast and new information about the Tubifast garments please visit Molnlycke Health Care

The Surgilast Tubular Elastic Bandage Retainer is similar to Tubifast, but this has a more 'netting' appearance.