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Why did you volunteer to be the Triage Manager for
the EDNF?
I had years of teaching
experience with both patients and their famiies on many topics, and had also
searched for over 9 years for a correct diagnosis of Classical EDS. Affter
having to retire on Disability, this Triage position allows me to continue to
give back to people needing help.
What experience did you have to bring to the party?
Over 25 years in nursing as an RN, specialized for
some time as a Critical Care Specialist and as a Pain Management Specialist. I
developed teaching plans for a wide variety of illnesses for both patients and
families.
I also have walked the same walk as many of our members in
trying to find out what I had and where did all the pain come from. I have
authored a number of articles for the EDNF Website, Loose Connections and the
Pan Newsletter, as well as for the American Pain
Foundation.
What do you want to achieve from the Triage
Manager's role?
As a voice for the EDNF, I am able to help members
and non-members find solutions and answers to their questions about Ehlers
Danlos syndrome. By doing so, it allows me to continue helping patients and
families to find physicians, answers, and the information they need to manage
their lives.
We are developing responses to help people with EDS around the world,
and have had inquiries from patients, families and physicians from all around
the world for information and requesting the new vascular information recently
printed.
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