1979 found Mika Miller, Western Regional Coordinator and President of the Greater San Diego, EDNF working as a nurse.  At the age of 24, when diagnosed with

Ehlers-Danlos, Mika chose to ignore the warnings and advice of her Rheumatologist.  She continued to be physically active (even though he warned a full body cast was eminent to heal the subluxations and dislocations) and even decided to travel the world.  Off on a trek to the Middle East she learned the hard truth.  “You can only pretend that you are “normal” for so long until one day it catches up to you.” 

Twenty years later it did!  Depressed, anxious to try anything to get better and wondering what help might be out there in the cyber world, Mika jumped online and googled, “Ehers-Danos syndrome.”  Up popped EDNF Los Angeles and "my life was changed". "After twenty years of feeling alone and unsupported, EDNF was there for me and that is why I volunteered to be a Regional Coordinator". 

What experience did you have to bring to the party?

The loneliness and isolation of Ehlers-Danlos syndrome made me realize that sharing my experiences with the medical community was my future and possibly my calling.  I had been a nurse for seven years teaching patients about their pre and post operative care.  Now, it is my goal to take that teaching experience and apply it to the education and awareness of EDS.  I have a unique opportunity in that not only do I help myself since I suffer from this syndrome but while I am educating the medical community I am in the long run helping all those who have EDS now and in the future.

What do you want to achieve from the RC role?

Belonging to EDNF for about 5 years, first as a member, then as the President of the Greater San Diego, EDNF and now as the Western Regional Coordinator, I find myself both grateful and anxious.  I am grateful to have found such a wonderful organization and anxious to assist it in the growth that is planned for the future.  As a Regional Coordinator my desire is to instill in local groups and their group leaders the excitement and understanding of what they are capable of doing.  I would like the leaders to dream big and not be afraid to ask for help from their members and the medical community.  I would like them to speak loudly and often, increasing awareness within their communities.  And finally, I would like them to share both their successes and failures with me and the other groups.  Because of their willingness to work hard for EDNF and their local group, all of us can learn and grow.