Patients Do Become Experts in Their Healthcare: Just ask @ePatientDave
It’s true. Social media has been of great value for our children in the world of Russell-Silver Syndrome. A very rare disease, or “syndrome” as it is more commonly known”, was once referred to in unread published journals as a growth disorder that typically resulted in children developing cognitive issues. Thankfully, ten years ago when my son was diagnosed, the internet was at the cusp of becoming legendary for its wealth of information. At that time, well-respected leaders in many facets were guarded and warned newbie internet lurkers about false information being shared over a global interface. As a mom who had to fight for a diagnosis for her son, I was willing to take my chances to find the information I needed to ensure adequate healthcare for my infant son. Ten years later, many Facebook posts, and advocacy meetings with legislators demanding quality care for children with rare disease – social media has helped to guide newly diagnosed children and their families with much needed and valuable sharing of information to assist in quality care. Now, once a very rare disease, Russell-Silver Syndrome has a place in the health system to allow for equal opportunity and incomparable health care. For the record, my son is far from having “cognitive issues”. A straight “A” student and accelerated reader, Russell-Silver Syndrome is much more than what those old journals have portrayed.
In this article and TEDMED video, an international patient engagement advocate, @ePatientDave with the Cleveland Clinic provides great insight into the value of social media in healthcare.