Why did I accept a Directorship of EDNF?
As a doctor who specializes in
connective tissue disorders, I have long seen those with EDS. In years
past, making the diagnosis for us was easy but we had little to offer in the
form of treatment. On the other side, the journey taken by those with EDS
to even get to the diagnosis was daunting. While a diagnosis was a
positive step forward, we left such individuals on a dimly-lit path
ahead. We have learned so much from those affected by EDS. It
became clear that we not only needed to serve the individual patient but the
population as a whole. We need to do better by educating other healthcare
professionals about recognizing EDS and initiating dialogue to improve the
lives of such people. Through the EDNF whose mission is largely
information, we can begin to educate healthcare professionals by sending out
information, making it more readily available, and empowering the patients
themselves. Once identifying expertise in the various medical fields, we
can begin to talk and formulate better ways to treat…EDNF can be the focusing
lens through which this can happen.
What skills and experience do I bring to the position?
I have little organizational experience
to offer the Board but what I have is the keen insight into the many issues
faced by those affected by EDS and the vision of how to address the many needs
still left unmet. My experience with hundreds of individuals with EDS has
identified the many, many, many issues that still remain. These are the
questions I can challenge the Board with and help identify solutions to move
do I want to achieve as an EDNF Board Director?
EDNF must remain a support organization
for those with EDS. It must continue to offer accurate information and a
place where people can ask questions and get the RIGHT answers. Although
research is important, the lack of knowledge from today’s (and frankly
tomorrow’s) healthcare providers is potentially harmful in that many will go
unidentified or be given the wrong types of therapies potentially doing them
harm. This is a war of information fighting the lack of information and
the wrong information (yes it is 1 against 2 but we are strong!). EDNF
can only hope to identify these issues, and make plans to move forward.
Any group is as strong as its members. We need YOU involved to spread the
information and provide support.