When I chose the theme for this week's Grand Rounds, I chose it because it is near and dear to my heart. Before I knew what it was called, I was looking for a "participatory medicine" model. Long before I heard the term "ePatient", I was one.
Also, in conjunction with the Grand Rounds, she was interviewed by a Doctor from Medscape. The finished article can be read here: Rare Disease Sufferers Connect With Internet
Patients with rare diseases often feel like outsiders. They suffer not only the effects of their illness but also from a lack of access to specialist care and patient education. Luckily, the Internet has helped patients with rare diseases learn more about their conditions and connect with others who have the same symptoms and/or diagnosis.
Robin S, who publishes the blog Survive the Journey, has faced a dilemma such as this with Cushing's disease...
Way to go, Robin!