The Astonishing and Sad Reality of Butterfly Children

I always have a knee-jerk reaction that borders on anger when I read about babies who are dealt an unfair hand in the rare disease world. It seems incredibly unfair to me that pain and suffering can be  part of anyone’s life, but it’s particularly awful when babies and small children suffer.

Such is the case when a child has epidermolysis bullosa, which is a collection of rare diseases that cause the skin to blister, sometimes at the slightest touch. It’s for this reason children with EB are sometimes referred to as “Butterfly Children.”

EB is an inherited disease that affects people differently. Some may have a mild case wherein their skin only blisters on their hands and feet, while others may have blisters all over their body that can lead to life-threatening complications caused by infection. It usually manifests during infancy or early childhood, and parents are taught to care for their child by learning to manage, and hopefully prevent blistering.

Suggestions include using sheepskin as a covering for car seats, and applying lotion to increase the suppleness of the skin. Extreme care should always be used when handling a child with EB.

Counseling is recommended for parents to help them cope with the fragile state of their child’s health, and most hospitals are more than willing to facilitate whatever social services are needed to care for the Butterfly Child.

Stem cell transplant therapy trials for recessive dystrophic epidermolysis bullosa are being conducted in at least two institutions. For more information contact the following:

University of Minnesota Center for Translational Medicine
Tim Krepski, RN, 612-273-2800 Toll-free: 1-888-601-0787

Cincinnati Children’s Hospital
Epidermolysis Bullosa Center
Anne W. Lucky, MD or Richard G. Azizkhan, MD, Co-directors
513-636-2009


Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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