Living with Epidermolysis Bullosa
(EB)
No one understands EB better than those people living with it every day. This set of rare, genetic, debilitating degenerative skin and tissue conditions can be life-threatening and impacts patients and families in a profound way. Although their skin is fragile, their determination is not.
Learning About EB
Epidermolysis bullosa (EB) is a rare, inherited disease in which the skin is very fragile—
so fragile that even just a friendly touch can injure it, leaving a painful blister or open wound.
A Disease of Fragile Skin
Because the skin is so fragile in people with EB, even minor friction on the skin can cause painful blisters and open wounds that are slow to heal and can lead to significant scarring.
Painful Wounds Inside and Out
Not only does EB affect the external skin, but also the lining of the mouth and throat, the eyes, and the digestive system.
EB Affects People Differently
There are four main types of EB and they range in how severely they affect a person. The most severe forms are junctional EB (JEB), and dystrophic EB (DEB). EB can have a big impact on how patients do everyday things that others may take for granted.
Living with EB
Living with EB means living each day with serious wounds that must be protected and
encouraged to heal. And for patients and families living with EB, it means limiting how they live in order to
minimize the risk of new wounds. It’s a challenging disease for both patients and caregivers.
Daily Pain and Itch
People with EB must take extraordinary measures to protect their fragile skin, and despite their efforts, many still live with chronic wounds all over their body. These wounds are extremely painful and itchy.
Caring for Chronic Wounds
It’s an ongoing battle to keep wounds healing and regular bandage changes, using special non-adhesive wound dressing, are necessary. These wound dressing changes are often very painful and can take hours. For the parents and caregivers who are involved in these daily bandage changes, the pain goes both ways.
Support and Resources
If you or someone you care for has been recently diagnosed with EB, you will find that there is a dedicated community of people who are committed to helping those living with this difficult disease. Patient organizations can provide information and resources, and a caring healthcare and research community are committed to finding new ways of treating EB.
Resources
Below are various organizations that work to support EB patients and their families and caregivers. This listing is provided as a resource only and does not constitute an endorsement by Chiesi of any particular organization.
DEBRA INTERNATIONAL
An EB patient support and advocacy network whose aim is to coordinate, in collaboration with its members, activities that are for the benefit of everyone affected by EB globally.
www.debra-international.org
EB RESEARCH PARTNERSHIP
EB Research Partnership (EBRP) is a global organization dedicated to funding research to treat and cure Epidermolysis Bullosa (EB).
www.ebresearch.org
PeDRA
PeDRA, the Pediatric Dermatology Research Alliance, is driven by the mission to create, inspire, and sustain research to prevent, treat, and cure childhood skin disease and vision of changing lives and healing children with skin disease through collaboration and discovery.
www.pedraresearch.org
These logos are the property of the respective organizations.
Sign Up to Stay Informed
Get the latest news and information relating to epidermolysis bullosa (EB).
SIGN UP NOW Please complete the form below. 