CSUF News Service

Professor Works to Reframe Care of Children Born With Rare Connective Tissue Disorder

Rebecca Bodan Headshot

As One Parent to Another

“Infancy is so hard, almost a blur, and I don’t even know how we got through it, but we did,” notes Bodan, who urges parents of EB children to believe in their child.

“Do not underestimate them, do not overprotect them. Do fight for them,” she urges.

“We are definitely fierce advocates for her when it comes to her healthcare and schooling,” says Bodan. “But we also have given her the tools and opportunity to self-limit and thrive.

“EB has brought struggle and tears to our family, but along with that has come triumph and joy. When my daughter was born, we held our breath every time we stepped into the neonatal intensive care unit, not knowing what we would find, if she would even be alive.

“And now she is 6 and making friends, learning and growing alongside her peers. She is living her best life. It is still hard, she still suffers in heartbreaking ways, but she is our little warrior and I could not be more proud of the life and the wisdom she brings to our home and community.”

Bodan recommends two resource sites:

Dystrophic Epidermolysis Bullosa Research Association of America, or DEBRA

EB Research Partnership

A woman’s life changes forever when she becomes a mother. But for some, it changes far beyond what they could imagine. 

Shortly after the birth of her daughter, Rebecca Bodan discovered that the baby had been born with Epidermolysis Bullosa, or EB, a rare genetic connective tissue disorder in which the skin is extremely fragile, and will blister or tear as a result of mild friction such as being held, rubbing against seams in clothing or even such activities as writing and walking.

In many cases, it also can affect the eyes, gastrointestinal tract, heart, bone density — even delay fine and gross motor development.

It is so rare, “for most families, their baby is the first child born with the condition at their hospital. For us, we were the second, with the first being 10 years older.”

The disease that she had never heard about prior to her daughter’s birth consumed her life as she learned to take care of her daughter’s wounds, the visits to specialists, the cost of her care.

Bodan, an associate professor of nursing at Cal State Fullerton, turned her research focus and passion to fight this genetic disorder that has no known cure and no Food and Drug Administration-approved treatment. As part of the battle, she recently completed a six-month sabbatical in which she developed a theoretical paper in an effort to reframe the care of a child with EB through the lens of medical trauma.

Bodan’s paper emphasizes that treating such individuals is much broader than the current focus only on their medical needs — to that of psychosocial
health and how the disorder affects the victims’ mind and behavior.

"I do believe many providers know that EB can impact psychosocial health," she stresses. But caring for a child with EB can be so intense and totally consuming that it leaves little time for specialists to ask how the child and family are doing, Bodan admits.

"Some children and families are innately resilient and don't necessarily need intervention," says Bodan, who has worked with the Dystrophic Epidermolysis Bullosa Research Association (DEBRA) on developing international clinical practice guidelines for EB providers.  "It is important for providers who care for children and families affected by ED to at least consider and assess their patients, build resilience where possible and refer for intervention where warranted."

“My ultimate hope is that those caring for children with EB gain a better understanding of the depth and breadth of the psychosocial trauma and distress these kids go through.

“My mission is to bring awareness to the disease — because with awareness comes funding, and private funding is the only way clinical research can move forward for a cure when it comes to rare disease — and also to help EB providers understand the bigger picture of what it is like  to live with EB, for the children and their families."

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