Are You A Discerning Medical Consumer? 
by Karen L. Ball

Lately, due to a series of events, I have been ruminating on the plethora of online and traditional resources at our fingertips. It’s pretty much standard that after receiving any diagnosis today individuals take to the internet to delve further in their understanding of their diagnosis. They rely on their healthcare provider to guide them in the dispensation of their healthcare, diagnostic needs and follow-up care. It is our responsibility as a discerning medical consumer to have due diligence in all matters relating to our own or our loved ones health. We have a finite amount of time and money and with proper awareness and planning we can make the best use of those precious commodities. 

The Sturge-Weber Foundation will be developing a series of articles and resources to assist you in becoming a discerning medical consumer. The series will address ethics and the doctor-patient relationship, medical necessity, communication, medical records and record keeping, support and resources and much more in general and also as it relates specifically to a Sturge-Weber diagnosis. We will be engaging your participation and input throughout the series with a variety of polls and surveys. Some of the best advice I know comes from those who have gone before you but one must also temper that advice and advice from healthcare providers as it pertains to your own unique circumstances…be a discerning medical consumer. 

A Sturge-Weber diagnosis initially hits you in the gut like a sucker punch! Once you can catch your breath most of you are off and running to find THE best doctor, THE best resources and THE best support you can amass. The SWF has been a respectable and comprehensive network of learning and research to help you confidently launch this new phase of your life. We can assist you to ascertain what needs you have and establishing a course of action. 

Of course, then you move on to the “veteran” stage. You know the one where the initial crisis has passed and you learned to cope and exhale instead of holding your breath. The SWF wants to be sure you don’t live in angst but never forget SWS is a lifelong condition that has evolving medical and psychosocial needs that must be addressed. This series is equally important for you! We will be addressing many issues related to aging with SWS in the coming year and as a discerning medical consumer “veteran” we will be engaging your wisdom and addressing your evolving and unique needs as well. 

Never Forget…Together we are Better!