ITP: The Patient’s Perspective
Stephen Confer, MD (Class of 2004)
John Doan, MD (Class of 2006)
Charity Karpac, MD (Class of 2006)
University of Oklahoma College of Medicine
Cindy Neunart, MD
Hematology-Oncology Division, Department of Pediatrics
University of Texas/Southwestern Medical Center
Websites are a common source of information for patients and their families who seek information about unfamiliar diseases. Most of the available information about ITP, as well as other diseases, is written by doctors and for doctors. We thought that the most informative and relevant way to tell patients and their families about ITP would be to present the actual experiences of patients with ITP, as much as possible in their own words.
We selected four patients to tell their stories. These four patients were selected because their stories have important messages for all patients with ITP, and they are very effective in telling their stories. They were very enthusiastic to participate in this project, telling us that this information would have been helpful for them when they first learned about their diagnosis of ITP. We wrote these stories after extended interviews, and then the patients reviewed and edited them. Names, locations, and dates were changed to protect confidentiality.
Dr. James George, our advisor for this continuing project, adds some discussion at the end of each patient’s story to emphasize important points. Dr. Cindy Neunart, a pediatric hematologist at the Children’s Hospital of Dallas, University of Texas Southwestern Medical Center, contributed the important story of a 4-year-old boy with ITP. Dr. Neunart discusses the important issues that are specific for ITP in children. At regular intervals, these stories are reviewed and updated by the patients, to provide their current information and perspectives. Dr. George’s discussion is also reviewed regularly, to provide new data on management of patients with ITP.