Table of Contents
Patients, Families and Friends
Health Care Providers
|Atlanta Sickle Cell Buddy Program|
|Resources 2 - Patients and Families - Patient Care in Atlanta GA|
For Children with Sickle Cell Disease and their Siblings 2001-2002
Introduction: The demands of having a child with sickle cell disease are great for any family. Children with sickle cell disease live with pain. This inherited disease can have an extremely variable course, but generally means lifelong fatigue, increased infections, and unpredictable episodes of severe pain. In the past 5 years, new approaches offer the possibility of cure and effective treatment. We in Georgia helped make medical history by major contributions to the national advances in sickle cell care and research. However, healthcare workers and educators have recognized that not only do these children have complex medical issues, but also have major psychosocial needs. They realize that their patients live with the illness, stresses, and fears and that their psycho-social needs are not intermittent, but rather an ongoing challenge for both the patients and their families.
Buddy program core: This program addresses these psychosocial needs by tapping into students at both Emory University School of Medicine and Morehouse School of Medicine, matching a medical student with a buddy, a child with sickle cell disease or one of their siblings who is > 5 years of age, for a commitment of 1 year. The program will provide $20/month to each buddy pair to have an outing at least once a month. There will also be a kickoff party and 2 other large party events throughout the year. The program will start with 65 buddy pairs. Medical students will transition every 1 or 2 years, due to their academic schedule. Unlike ordinary Big Brother Big Sister programs, this program has the potential to improve the well-being of children with sickle cell disease and their families by providing a comprehensive plan.
Cassandra Josephson, MD (Emory pediatric hematology-oncology fellow) and
Georgia Comprehensive Sickle Cell Center and Children’s Healthcare of Atlanta at Egleston and Scottish Rite hematologists and staff.
Budget for the first year: $30,000 plus In-Kind donations
Track record: Dr. Josephson set up this program in Denver two years ago, with excellent results and funding by the Rod Smith Foundation (Rod Smith is the pro-bowl wide receiver from the Denver Broncos). At the National Sickle Cell Meeting in 1999, the program received high praise from physicians, nurses, social workers, child life specialists, and families. She helped direct a similar program at The University of South Florida College of Medicine while she was a medical student, funded by the Moffit Cancer Center in Tampa.
Georgia Comprehensive Sickle Cell Center cares for over 1000 children and adults with sickle cell disease and Children’s Healthcare of Atlanta at Egleston and at Scottish Rite care for over 600 children and families with sickle cell disease, and are national leaders in sickle cell health care delivery, research, and multimedia education. Both institutions’ staff has led support groups and parenting education classes for several years.
Current Status: Here is some info on the buddy program 2001-2002. The response this year by the families and medical students has been excellent. The reception of the inaugural year 2000 was amazing. Families are requesting that their children be a part of this program if they weren't involved last year. Families that have children involved want to remain involved. As for the medical students 13 of the 41 medical students involved from Emory are return participants. Eight of the 26 medical students involved from Morehouse are return participants.
With your help we can make this program a reality in Atlanta and help those children and families in our community who live with this debilitating disease.