A Q&A with DebRA’s Nurse Educator

One of the most pivotal persons in the lives of an EB patient is a caregiver. Along with the great responsibility of carrying out daily patient care processes, a caregiver must stay informed about medical supplies, pain management alternatives and other day-to-day healthcare needs and resources. That often involves diligent research – reading, interaction in community forums, frequent visits with doctors and medical specialists, and, at some point in the process if not on a regular basis, a call to this invaluable clinical resource: DebRA Nurse Educator, Geraldine Kelly-Mancuso, RN, known to the parents she supports as simply “Geri.”

As nurse educator, she serves as a point of contact for new parents, patients and healthcare professionals caring for patients with EB. We recently asked her about her role with DebRA, which she has served since August 2006.

*This content is provided for informational purposes only and is not intended to be a substitute for the advice of your health care provider, nor should it be used to seek help in a medical emergency. If you have any questions, please consult your health care provider.

EB Resource (EBR): What was it specifically about the nursing profession that first drew you to it?

Geri Kelly-Mancuso, RN (G. Kelly): The ability to serve others and make a difference.

EBR: How did you first become involved with DebRA?

G. Kelly: When I was relocating, my nurse recruiter mentioned this program would be starting at the time I was moving to the area. So I think EB found me.

EBR: What is the most rewarding part of the job?

G. Kelly: Helping a new family dealing with their child and this diagnosis and helping them get to a point where they are helping with new babies.

EBR: What care issues and lifestyle challenges seem to be of most concern to the families who reach out to you?

G. Kelly: SCC (squamous cell carcinoma) is the scariest. There are no good answers yet.

EBR: What are some common mistakes that new EB parents tend to make with regard to care? And do you have any advice for how to avoid making them?

G. Kelly: Sometimes mistakes are unavoidable – parents will do things that cause blistering. It is inevitable, and the parents should not beat themselves up because of it.

EBR: Are there any particular products or household items that you consider essentials in an EB household?

G. Kelly: Bleach and vinegar. Both help decrease bio-loads when used properly.

EBR: What questions do parents and patients tend to ask you most often?

G. Kelly: I am asked for MD referrals and shoe/sock advice a good deal, but care for newborns is the biggest area.

EBR: Do you have any care advice or lifestyle tips to offer readers with regard to managing the holidays and this cooler time of year while keeping in mind their family members with EB?

G. Kelly: Actually, cooler, less humid temps are better for folks with EB. I would suggest touching base with the EB family member to ensure that the food during the holidays meets their needs. Some require a soft diet.



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Identify & Manage Caregiver Burnout

Fast Facts About EB

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