April 21, 2015

At just 22 years old, nursing student Elvelyna Beaubrun can add published author to her burgeoning list of accomplishments. Elvelyna, who was diagnosed with sickle cell anemia as a baby, wrote her memoir to raise awareness about the painful disease and offer solidarity to the community of over 100,000 in the United States who are afflicted by it.

“It’s important that people really see what we go through and understand it’s painful. It’s unbearable,” says Beaubrun speaking with NBC Philadelphia. Beaubrun was profiled by the news outlet back in September 2013 to highlight the resilient attitude patients at the Children’s Hospital of Philadelphia can have. Her personal journey was part of a larger story addressing CHOP’s proximity to finding a cure for the disease.

Dr. Kwaku Ohene-Frempong and colleagues at the Comprehensive Sickle Cell Center at CHOP are developing a new procedure that may cure the chronic condition. Their procedure, which involves transplanting stem cells to babies in utero, sounds promising, but a lack of funding has delayed progress.

Despite the delay, Beaubrun remains optimistic and continues to move forward, just like she’s done her whole life. “Despite the trials and tribulations of this disease, it has only made me stronger,” writes Beaubrun. Her memoir, The Girls with the Lion Heart: The Resilient Life of a Champion, Volume One, is available for purchase through Trafford Publishing.