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Senior Katelyn Ward Is Raising Awareness About EB

Donna Klinger

Katelyn Ward and Hodges Caldwell

Katelyn Ward and Hodges Caldwell, founder of EB Lifestyles, as he presented her with a wheelchair. Photos by Tyler Kraft.

Mount St. Mary’s University senior Katelyn Ward has found roots in the university’s supportive community. Born with epidermolysis bullosa (EB), a Collagen 7-A1 genetic defect that causes skin to be brittle and blister, Ward had no skin on her legs at birth. She has faced considerable challenges, including 28 surgeries in the last 11 years, but as she states “EB doesn’t define me. I define it.” She is committed to providing education and raising awareness about EB with the goal of increased lifestyle improvements and research in search of a cure.

katelyn-with-t-shirt-in-text.jpgA health science/nursing program dual degree major, Ward is being aided in her EB education campaign by the Mount women’s basketball team. The team is promoting EB awareness at its February 10 game with Canisius College at 1 p.m.

Ward’s easy-to-understand explanation of EB involves grass, roots and dirt. “Think of your skin as grass, roots and dirt. That’s how skin should be. My skin is just grass and dirt, no roots. Think about if you just pulled the grass up out of the ground, that’s how easily my skin tears off,” she said.

Ward further explains that friction caused by the wrong clothing, shoes, adhesive, or even walking does damage to her skin. She cuts down on blistering by making accommodations such as wearing smooth leggings underneath her jeans and using friction-resistant pencil grips when writing.

“This is not a case where ignorance is bliss,” said Ward. Growing up, well-meaning people called the police to report that she was being abused. Other members of her family have EB, including her mother and grandfather, although none are as severe as her case. Her supportive family has ensured that she has received the best medical care possible. They also allowed her to do what she wanted, which included playing softball and dancing competitively through high school.

The disorder has progressed as Ward has aged. As she says, “Every scar has a story. Scars are tattoos with better stories.” EB has affected her body in ways that are not visible, including internal strictures, blood clots and holes in her stomach lining from acid.

At the Mount, Ward still experiences people who stare at her because of her scars and blisters. However, she has been blessed with supportive friends and a deepening of her faith. Her grade school and high school friends wanted her to be as normal as possible. Her college friends recognize that their typical activities can be difficult for her and katelyn-ward-hug-of-gratitude.jpgreorganize plans to meet her needs. “I’m thankful that I have friends who are accepting of what I need.” This year she shares her Towers apartment with her best friend, which she declares has been a godsend.

Another godsend this academic year has been the gift of a wheelchair from EB Lifestyles, a nonprofit organization that donates portable mobility devices to those who suffer from EB. These mobility devices allow recipients like Ward to live a more productive and independent lifestyle. Before EB Lifestyles Founder Hodges R. Caldwell, Jr. came to campus to deliver Ward’s wheelchair in December, she often drove to classes because walking around campus had become too painful. Now she can comfortably traverse campus in her wheelchair, stopping to talk with friends along the way as well as more fully enjoy the surrounding beauty.

Caldwell, who has EB, and others with the disorder are also a support network for Ward. They make friendships as children at EB camps and see each other at their annual clinical hospital visits as well as at the debra Care Conference put on by the largest organization in the United States that seeks to improve the quality of life for those living with EB.

When delivering Ward’s mobility device, Caldwell spoke of the support network and of the difficulty of having valued friends pass away from the disorder. “We hold on to the idea that we will see each other next year and we stay in close contact,” he said.

As she struggled with the question of why terrible things happen to good people, Ward leaned on her faith in God. One Bible verse that she finds especially comforting is Jeremiah 29:11: “For I know the plans I have for you says the Lord, plans to prosper you, not to harm you, plans for hope and a future.”

Ward’s plans include working as a pediatric nurse at a hospital that has frequently cared for her. A volunteer fundraising coordinator for EB Lifestyles, she also seeks to continue to promote EB awareness.

Donna Klinger