The Oklahoma TTP-HUS Registry
Revised March 20, 2007
Patient Group Meetings. Since September 1996 we have had three meetings each year at the OBI, on a Tuesday evening with supper followed by a program. These meetings were initially conceived as a patient support group but, in fact, these are for former patients, not patients with a current illness, and their need for support is much less than their need for information. The major issue faced by our former patients is their difficulty in understanding and explaining the serious illness from which they have recovered. They face a total lack of familiarity with TTP-HUS among friends and colleagues, and this creates a sense of isolation and frustration. An average of 17 former patients, plus an additional 16 family members and friends, have attended each session. These sessions have been valuable for the doctors and nurses as well as for our patients. From these meetings, we have learned a great deal about the issues and impact of this experience on our patients’ lives. The main program of these meetings is the progress report on our Registry studies. This can be a formidable assignment: explaining data on TTP-HUS to patients who have had TTP-HUS! I feel like the chairman of the board reporting to my shareholders. These former patients are my constituents; they have the biggest stake of all in our data. This year we are completing our 11th year of this successful program. We are helping other centers, in Kansas City and Columbus, Ohio, who are planning to begin similar patient support programs.
Click the following links for more details about:
Oklahoma TTP-HUS Registry as a resource for patient care
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