For patients, families and friends, a diagnosis of
Epidermolysis Bullosa carries with it great uncertainty.
There is so much to learn about EB:
- living with EB
As an industry leader in wound care,
McKesson Patient Care Solutions (MPCS) can help ease the burden. Our EB Advocate Team's product experience and
insurance expertise give us the ability to be an ally to those with EB and their loved ones.
The EB Nurse website is part of our effort to do just that.
MPCS supports the EB community in many ways:
- MPCS publishes "The EB Advocate" newsletter, which includes articles about people who have EB, as well as product information and insurance tips.
- MPCS provides the EB Advocate Facebook page and Twitter page.
- MPCS partners with organizations and foundations that provide resources to people living with EB and their families.
Education is a critical component of EB care. We hope that EB Nurse can be a trusted resource for information. Here, you will learn about products and insurance from MPCS experts.
You will find tips from EB Nurse readers, too. There is also information about the genetic origins of EB, practical advice for dealing with everyday concerns such as hygiene, nutrition and travel.
The rare nature and profound daily challenges of EB make emotional support just as important. We want EB Nurse to be a place where people can connect with others who understand the physical, mental and emotional demands. A place where people can come to seek answers, find understanding, share wisdom and offer encouragement.
At the same time, we hope that EB Nurse can be a catalyst for something even greater. By working with other advocates, we hope to create awareness, raise money and support research that will lead to more effective treatment and, ultimately, a cure.
In the meantime, we are committed to do all that we can to ensure those affected by EB have the best quality of life possible.
Dr. Kara Shah served as a consultant for the EB Nurse website. Dr. Shah is the Pediatric Dermatology Division Chief at Cincinnati Children's Hospital and Associate Professor of Pediatrics and Dermatology at the University of Cincinnati College of Medicine.
Dr. Shah became interested in EB in 2003. She learned a lot about EB from Dr. Paul Honig, her former colleague and mentor at Children's Hospital of Philadelphia (CHOP), and from her EB patients.
"I try to provide patients and caregivers with the tools to take control of their disease," Dr. Shah said. "There is so much information out there on dressings and wound care that it can be overwhelming for families. Many physicians have never cared for someone with EB. I try to assist in the general medical care of each child and in the coordination of medical services, as well as in educating other care providers about this disease."