BU recently welcomed 3,625 freshmen, each with a unique journey to campus. Photojournalist Jackie Ricciardi wanted to capture them as they prepared to launch this new chapter. So over the summer, she traveled from Minnesota to New York to Boston’s suburbs to photograph several members of the Class of 2019. They welcomed her into their homes and shared their dreams, fears, and the ways their families have shaped their lives. Parents spoke candidly about their anxieties and aspirations for their children. In our series “Rite of Passage,” BU Today brings you four students’ stories.
Kayla Furbish was 14 when she was diagnosed with Ehlers-Danlos syndrome (EDS), a rare, inherited connective tissue disorder caused by a defect in the structure or production of collagen or the proteins that interact with collagen.
Since then, Furbish (CAS’19) has had to deal with the daily joint dislocations, as well as gastrointestinal, cardiovascular, and neurological problems the syndrome causes. She’s undergone numerous surgeries, had infusions, and learned to live with chronic pain. Along the way, she’s had to give up a lot of things she used to do: tasks as simple as picking up a gallon of milk are now hard for her. And she says that because Ehlers-Danlos syndrome is outwardly invisible, she appears healthy even though she’s often sick and struggling to accomplish tasks most people take for granted. “I look just like everyone else,” she says. “I don’t have any outward differences that alert the public to my disability, and because of that, I often face judgment.”
When it came time to look at colleges, the Watertown, Mass., native knew she needed to stay nearby so she could continue to see her physical therapist and her doctors. Furbish says she knows there are going to be challenging times ahead as she struggles to keep up with everyone else, but she’s determined to “find the things that work for me.”
The double major (English and psychology) says she dreams of becoming a novelist some day, but will most likely pursue a graduate degree in psychology after graduation.
On Ehlers–Danlos Syndrome
“ I try to hold everything together externally rather than internally because it’s not really there genetically.”
Kayla FurbishAudio — 50 Seconds
On Challenges of Life at BU
“ I don’t want to start falling behind, or making myself sicker or injured because I’m trying to keep up with everyone else.”
Kayla FurbishAudio — 51 Seconds
On Worrying About Her Daughter
“ I worry about her falling apart.”
Cindy Furbish(Kayla’s Mother)Audio — 47 Seconds
November 17, 2016
November 11, 2016
October 31, 2016