Growing Up With Sickle Cell Disease: Time to Take Charge

Due to the increased life expectancy of sickle cell disease (SCD) patients over the past fifty years, there is a need to prepare adolescents with SCD for adulthood. Kinney and Ware (1996) describe that the transition from pediatric to adult care can be one of the most “traumatic” experiences for adolescent patients with SCD. For the past year, I have been working with the physicians and medical staff in the Duke-UNC Comprehensive Sickle Cell Center to create the Duke Sickle Cell Disease Transition program to address the psychosocial needs of these adolescent patients. The program primarily consists of an education program that provides patients with information about sickle cell disease, how to utilize the adult clinic's services, and how to take responsibility for their medical care. My focus this summer is to continue going over the education material with patients while they are in the clinic for their regular appointments. I will also be working to create a sustainability plan for the program so that it can continue after I graduate and when the hospital staff I am currently working with are no longer there.

I would like to thank my faculty mentor, Dr. Deborah T. Gold, PhD for all of her support throughout this project. I would also like to thank our community partners, Vivian Lewis, a Certified Child Life Specialist in the Duke Children's Health Center, and Elaine Whitworth, the adult health educator in the Duke-UNC Comprehensive Sickle Cell Center and director of the Bridges Pointe Foundation, Inc. In addition, thank you to the the Office of Service-Learning, the Deans' Summer Research Fellowship, the FOCUS Program, and DukeEngage for your continued support for this project.

Kinney, T. R., & Ware, R. E. (1996). Sickle cell disease: The adolescent with sickle cell anemia. Hematology/Oncology Clinics of North America, 10, 1255-1264.

-Grant Smith
Trinity '08

Quality of Life-Duke-Durham Neighborhood Partnership

My name is Hannah Craddock and I am a rising sophomore at Duke University. My DukeEngage job is working with Quality of Life, a group that focuses on community organizing. It is through the Office of Community Affairs and is housed in the Erwin Offices.
I recently looked at my calendar and noticed that my summer is over half over. I just cannot believe how fast everything is going by. Work is going well-we have already completed many projects that were set up for us to do this summer. The newsletter articles are written and should be organized and set to be printed by mid-July, I have finished the updated brochure for QOL, and organization of all the files are coming along nicely. My favorite project however was the Pauli Murray Place celebration banquet. Pauli Murray Place is a neighborhood of fourteen homes that QOL, as well as Durham Community Land Trust, Habitat for Humanity, and Self-Help all helped build for low-income families. I helped organize it (I got to make the program and buy/do the flowers for the event, which allowed me to once again be creative!) and it turned out amazingly well. They had two home-owners speak and it really hit me how big of an impact owning a home had on them. It really made me realize how much I can take for granted.
One of my favorite parts of this job is being able to go out into Durham and learn about it. While this seems silly to think about (especially considering I am from Cary, NC), I feel like I knew nothing about Durham before this summer. I am given a chance to go to meetings with the community, but also just enjoy going to different places to eat lunch and seeing different parts of the community. Cate, a girl I work with, knows a lot about the area and always seems willing to share insight into Durham. It constantly amazes me how much history Durham actually has and how it is still impacting the population today.