Each one of is aware of the dangers of delaying the diagnosis of Rhabdo; unfortunately, many of us know this from first hand experience. We are all aware that Rhabdo is a rare disease and many pediatricians or primary care doctors have no idea how it presents itself.
The idea behind the Presentation Booklet is to provide both a medical explanation of rhabdo, written by our clinicians, as well as many, many stories of how this disease presented with the members of our families. ACOR is awash with these stories. Let's compile them, add photos and illustrations (where available), and create an e-booklet that can be distributed to every pediatrician and primary care physician we can reach.
Please email your stories to me (for now) and we can begin the compilation process. Anyone interested in helping with the project, please contact me as well.