With increased access to and understanding of technology, people are finding their way online, searching out interests like cooking, basketball and even myelofibrosis. Once assumed to be the domain of the young and frivolous, a new group has turned to the internet as a means of learning about and connecting to what is important to them. This is especially true for patients with orphan diseases like polycythemia vera, essential thrombocythemia and myelofibrosis where the next closest patient may be hundreds of miles away.
The use of new technology like Twitter, Facebook and listservs has created a network previously unheard of in the health community. Patients (and their families) now have access to a wealth of information and anecdotal first hand accounts of patient experiences with doctors, treatments and tips for living day to day with a chronic illness. If there is a gap between the clinical advice of a physician and the need of a patient to hear directly from someone who has experienced an MPD, social media and online networks can bridge the gap for some patients.
We’ve long linked to MPD-focused forums including MPDChat, MPDNet and MPDSupport. All offer a means to discuss and learn from other patients and occasionally doctors. In addition we’ve branched out to other social media outlets such as Facebook where you can keep up with MPD news and interface with other patients. It seems strange to say, but if you are someone with access to technology, it’s never been a better time to have an MPD.