Here we go!
The 4th edition of Bill & Dawne’s Journal is online now. It came to be because they elected to split out their personal and family journey from their medical and life story, endeavors, research, and advocacy prompted by Bill’s diagnosis of Klippel-Trenaunay Syndrome in 1997. The 4th edition of this Journal expands to include all Congenital Vascular Anomalies.
The new look and focus is driven by Bill’s lifelong journey, his lack of diagnosis, misdiagnosis, and difficulties getting proper care and treatment, These apparently are a universal issue for many people who not only share his diagnosis, but also those with “differential diagnosis”.
Recent changes in international norms for diagnosing congenital vascular anomalies and malformations has brought yet another challenge to Bill’s 1997 diagnosis, this while he benefited from his first ever surgical/procedural intervention; a benefit of his 1997 diagnosis. It seems the diagnostic ground keeps shifting for those born rare, particularly those born with congenital vascular anomalies. So it is, Bill and Dawne have made all congenital vascular anomalies and malformations the subject of their latest improvement to their almost almost 20 year long journaling endeavor.
Seen, yet Not Heard 