Why did you volunteer to be a Regional
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. â€śYou can only pretend that you are â€śnormalâ€ť
for so long until one day it catches up to you.â€ť
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,
â€śEhers-Danos syndrome.â€ť 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
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
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