TTP: The Patient’s Perspective

Websites are a common source of information for patients and their families who seek information about unfamiliar diseases. Most of the available information about TTP-HUS, 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 TTP-HUS would be to present the actual experiences of patients with TTP-HUS, as much as possible in their own words.

We selected five patients to tell their stories. They were selected because their stories have important messages for all patients with TTP-HUS, and all four are very effective in telling their stories. These four people were very enthusiastic to participate in this project, telling us that this information like this would have been helpful for them when they first learned about their diagnosis of TTP-HUS. 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. 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 TTP-HUS.

Patient Stories:

• Bridget's Story
• Emily's Story
• Melissa’s Story
• Ralph's Story
• Liz’s Story