A BYU student with a rare genetic disorder shares her optimism with others through song and service.
She winces as she unwinds the bandages from her blistered skin. Skin so sensitive that even friction from her clothes opens new sores. For Jamie D. Gibson, ’04, and other sufferers of Recessive Dystrophic Epidermolysis Bullosa, EB for short, this is life, 24/7
EB is a genetic disorder that ravages the skin and mucous membranes, and Gibson, a 26-year-old American studies major from Dugway, Utah, is one of the 100,000 Americans with the disease. Having won a genetic lottery that has caused her to suffer from EB her whole life, and despite losing her brother Ben to the disease, the charitable and upbeat Gibson chooses an optimistic outlook and focuses her energy on her greatest joys: singing and service.
“Heavenly Father gave me optimism,” Gibson says. “I’ve never thought ‘why me?’ I’ve always known why me; I’ve never had to ask that. The only time I’ve ever had to ask ‘why me?’ is ‘why am I so blessed?'”
Once a member of BYU’s women’s chorus, Gibson started taking voice lessons in high school despite the intense pain from open sores in her mouth and throat. Her soprano voice has resonated at numerous events, including Salt Lake Stinger’s baseball games where she’s sung the national anthem. She has even made two Christmas CDs, from which all proceeds—$10,000 so far—have gone to the EB Children’s Research Foundation in the quest for a cure.
“I think her music speaks to people’s souls; it speaks to people’s hearts,” says Lynn Fechser Anderson, ’61, longtime friend and director of the Epidermolysis Bullosa Medical Research Foundation. “All she wants to do is sing. She wants to bring happiness to others through her music.”
As a counselor at Camp Wonder in California and Camp Discovery in Minnesota, camps for kids with various skin conditions, Gibson exemplifies the possibilities life holds for those with diseases that can keep them bedridden if they let it. One of the oldest survivors of a disease that kills most by age 30, Gibson is in the honors program at BYU, loves to travel, and served a full-time mission as a family-history missionary in Provo.
“When she goes to the camps, she’s a role model to the EB kids. She’s also a great friend to them and an effective counselor,” says Anderson. “I think that a lot of Jamie’s satisfaction in life comes through service.”
“She can forget her illness and concentrate on helping somebody else,” says Gibson’s mother, Sheila. “When you’re with Jamie you forget she has EB; she is so focused on others and not herself. She’s a light to others.”
As Gibson prepares to graduate this August, she looks to continue singing and ponders attending graduate school. In particular, she would like to help others avoid the difficulties she’s had obtaining government financial assistance for her condition. Yet as she looks forward to the future, Gibson is careful to be thankful for the past.
“If 10 years ago I could see where I was at now, I would be amazed at the things that I’ve done,” Gibson says. “What Heavenly Father has planned for me has so far been better than what I planned for myself. It makes me excited for what is to come.”
Read more at more.byu.edu/gibson