Introduction of Some Special Guests

April 12, 2010

By Mark Dunning

After writing in parallel for a while about either the science or the personal impact of Usher syndrome, Jennifer and I find ourselves at the interface of these two points of view. Behind the scenes we have been holding a spirited and good-natured debate about communicating Usher syndrome information to patients, the boundaries between hope and false hope, and between science and pseudoscience. These debates have encouraged us to bring this discussion to the Usher community at large-at least those community members who read this blog, anyway-as we discuss disease diagnosis, progression, and management in both the medical and the personal sense of the word.

We'll begin the discussion through several posts featuring guest writers. All have Usher syndrome. They are of various ages and their vision loss is progressing at differing rates. We've asked them to tell their stories as a demonstration of the variability of their symptoms and to give a sense of how these symptoms impact their lives. Jennifer and I will then recapitulate some of our recent discussions about the ways in which this variability is-or could be-presented to newly diagnosed families and how that might affect patient and family education in a broader sense.

We hope you find the experiences of our guests illuminating and find the debate helpful. Please feel free to comment. We'd love the feedback.

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