Patients joining the conversations at a site like cysticfibrosis.com may come with hesitation. They wonder if they’ll hear things that are too scary. (There is a good chance their own health care providers told them that)!
Patient communities aren’t for all patients and care givers…but for many the opportunities to learn something new in personal, concrete, and targeted conversations is enough to keep them coming back for years.
They may find ways to ease the burdens of complicated treatment schedules. They will learn about new medications from patients who are experiencing them real time. They may just lurk (we have up to 2000 lurkers daily….reading and learning) or they may be brave and join in, ask questions, and even become senior members freely offering advice and lovingly answering the same questions that pop up weekly for years…(How to clean a nebulizer for instance.)
There are daily so many AH HA moments in the sharing of similar stories.
Moments that have been said…”Saved my life!”
That is why cyticfibrosis.com continues in our in our 18[SUP]th[/SUP] year of “lights on”.
Patient communities aren’t for all patients and care givers…but for many the opportunities to learn something new in personal, concrete, and targeted conversations is enough to keep them coming back for years.
They may find ways to ease the burdens of complicated treatment schedules. They will learn about new medications from patients who are experiencing them real time. They may just lurk (we have up to 2000 lurkers daily….reading and learning) or they may be brave and join in, ask questions, and even become senior members freely offering advice and lovingly answering the same questions that pop up weekly for years…(How to clean a nebulizer for instance.)
There are daily so many AH HA moments in the sharing of similar stories.
Moments that have been said…”Saved my life!”
That is why cyticfibrosis.com continues in our in our 18[SUP]th[/SUP] year of “lights on”.