We have an innate desire to feel connected with others who live life through similar situations.
Now on you do not have to experience your illness in isolation. This is a community where people like you are willing to reach out to others to provide advice and support. One definite reason why you need to join this community is when you or someone you care about is diagnosed with an illness, to find information. Here you can find 24/7 access to support, unbound by restrictions of time or location. Any person, anywhere, any time - whether they are a patient, caregiver, family member, or friend. You can find someone else in similar circumstances who understands what you are going through.
It is about finding hope. Corrie Painter, an angiosarcoma patient, passionately believes that networked patients save lives. In Rare Cancer Meets Social Media, Painter captures the joy of finding hope online. "When faced with mortality, I think the first thing many of us do is try and find someone, ANYONE else who understands what we're going through. I put feelers out into every corner of the Internet. And I found people! ... They took me under their wing and provided me with hope in spades. I clung to every word they wrote."
By telling your story, you can help shed light on a condition's symptoms, prognosis, and other details for those still searching for the correct diagnosis. Medical terminology and data, though undeniably important, can obscure what it means to live with a disease and make it difficult for most people to relate. Personal stories, though, frame our individual experiences in a way that lets others connect and find diagnostic clues that may have been missing.
In the case of rare diseases, where doctors simply don't have the answers to patients' questions due to low patient numbers and, consequently, insufficient research into the disease, it is the patients themselves who are banding together to find the answers they need.
A strong sense of community is at its heart of this community. You matter within the community and can influence and be influenced by other members.