Rare Diseases: Patient-To-Patient Blogs
Online patient Blogs provide opportunities to make global connections with others experiencing the same challenges and ups and downs with one’s disease or illness. Blogs that are created and maintained by rare disease patients can be a vital source of emotional support, a forum for helpful discussion and sharing of resources, information and diagnostics, sharing of personal experiences with different drugs and treatments, and just providing a spot where the patient can communicate with others in the same situation. Blogs become a “safe space” for rare disease patients to share. There can be positive shares, but there can also be times of confusion, pain, grief, and sadness. Blogs are a place where global stories can be expressed and heard. Blogging for a rare disease patient can increase empowerment, communication and social support, and helps one not feel alone but part of a community where everyone understands what one is experiencing and going through. Blogs can be a “safe haven” for the rare disease patient. It is a “safe space” where one gets to tell their story in their own words.
Blogs can also give medical and healthcare professionals a glimpse into the world of a rare disease patient, help better understand the world of having a rare disease. The blogosphere is a place for providers to understand and become informed from a patients’ story or narratives. It is a means for the provider to observe from afar how the rare disease is impacting the patient and their family on a day by day basis. It also lets the provider and outside world know what it is like to go through the medical system in a particular country. The Blog becomes the diary of a rare disease patient. The Blog becomes a tool that can help close the communication gap between patient, doctors, and healthcare professionals.