Knowledge, anecdotes, research, encouragement

kare-logoAre you trying to decipher and benefit from understanding the alphabet soup that is Vascular Anomalies? Are you biologically affected? Are you a new parent of a child whose vascular system looks a bit different?

Common among us is that our doctor’s explanations have us looking for more information. Sometimes this is true because our doctor’s prescriptions aren’t fixing us quick enough, or so it seems to us. While having a deep respect for our doctors and the extended medical community as they support us, we are Patients and Parents inclined to advocate for ourselves and thus we are curious.

This endeavor here grew out of roads traveled; many years now. We are working feverously to try to help, to develop understandings and provide encouragement through collective knowledge and experiences. In short, we care.

This is the sandbox we collectively play in. It’s called Vascular Anomalies. To be more precise congenital anomalies; meaning these developed during those precious weeks during gestation. Overwhelmingly, these anomalies were not caused by something mom ate or did. Many are purely random biological events due to a genetic mutation; meaning mom and dad did not pass us a gene that we in turn might pass on to our kids. You could say we won Mother Nature’s Lottery. Please bear with as we present a breakdown or handle on the very expansive list of possibilities. Somewhere in this list is a reasoned place where the doctors will assign us; and as was the case with me and many, reassign us when they look deeper and deeper into our biological construction. For sure, patience and time are very important attributes needed to determine our best care and treatment.

If you are new parent, it’s understandable that you want answers now. The reality is that the tools needed and used to get the diagnosis right are often not able to decipher the true extent of vascular anomalies at birth. You really don’t want the doctor guessing based on visual cues. Our Vascular construction is very complex and hidden under layers and layers of skin. Probably even more relevant, as newborns, we are still developing and growing. I’d venture to say that some congenital anomalies don’t show completely until puberty. Certainly, there are points before puberty that offer opportunities for accurate assessments; but being patient is a big benefit. After puberty, the best term I can find to describe many of our conditions is “degenerative” and that brings with it another set of challenges. Getting accurate and complete information and diagnosis seems vital before there is little we can do to make a difference in our quality of life. More on that as we develop our content.