Women of Teal is a play on the words "Man of Steel" used to describe Superman. I have found my fellow ovarian cancer survivors to be the strongest, most helpful women in the world. They are truly Women of Teal!
I hope women diagnosed with ovarian cancer who live in New Jersey and around the country will find this site useful.
A week ago I was still in the midst of experiencing Stanford MedX. MedX was a conference like no other
conference I had ever attended as an ovarian cancer survivor and research
advocate. In the words of Larry Chu, MD executive director of MedX , “MedX
seeks to unite all health care stakeholders in a conversation about the future
of medicine.” I saw those conversations taking place every day of the
conference. There were conversations between people who worked in the pharmaceutical
industry and patients, physicians and patients, caregivers and designers, and
patients and engineers. They didn’t just take place on stage or in the
workshops but in the hallways at Stanford, on the benches outside during lunch
and break and at the hotels where participants stayed.
I was lucky to have conversations with people I knew from
the twitter world and the blogosphere by the pool at the Sheraton where I was
staying. I was thrilled to meet and have lunch with Dr. Ann Becker-Shutte, who
is the mental health moderator for the #gyncsm chat/ community that I moderate.
She had conversations on stage, in workshops and in the halls of Stanford about
depression and chronic disease. I had conversations with high schooler Jack
Andraka (@jackandraka) who invented an inexpensive cancer detection test ,
Susannah Fox (@SusannahFox) whose website I have been reading for a long time, Marie Ennis-O’Connor (@JBBC ) whose excellent advice about twitter I have followed and Dr
Peter Yu (@YupOnc)president of ASCO about my experience of attending ASCO as an advocate.
One night after a busy conference day I had the pleasure of
spending time with Colleen Young (@colleen_young, #hcsmcs) , Janet Freeman-
Daily(@JFreemanDaily, #LCSM), Annette McKinnon( @anetto, and Meredith Gould
(@MeredithGould, ) and Ann. As online health care community leaders we shared ideas
about how to better serve and reach our communities. After meeting these women
in person I know that this is one conversation that will continue.
Sharing ideas and relaxing by the pool
I had different types of conversations with other e-patients.
I learned the best way to attend MedXand
how to not be nervous on stage from the e-patient advisors. My room mate, Meredith Hurston (@meredithhurston),and
I had some fun and some serious conversations before we collapsed from sheer
exhaustion after a busy day at the conference. When I spoke to Matt Dudley, I
told him I was moved to tears by his Ignite talk. There were hugs with other
patients when they finished their presentations when words seemed inefficient. Having
a niece with Type 1 diabetes made it easy to strike up a conversation with the e-patients
who had diabetes. And these are only a few of the interactions I had.
I also had conversations with the reps from the 3-d printing
companies. I am amazed at the quality and usability of the products those
printers produce. I spoke with Barrett Larson (@Barrett_Larson), Leaf Healthcare about his device designed to monitor patients and signal a change in position
to prevent bedsores.This made me wonder
about about how it could be used for
Alzheimers patients so we talked about that too. I spoke to Tal Givoly(@givoly), Medvizor, about the inclusion of gyncecologicCancers on the Medvizor website. And I spoke
to Joseph Kim (@JoPeKim), Eli Lilly, regarding ways to increase the
participation of patients in clinical trials.
I learned information about other chronic illnesses that I might never have known had I not attended MedX such as what difficulties other patients
have functioning at work or adjusting to things when first going to college or
getting data from instruments that record blood sugar. I also learned about the
difficulties physicians face when given only 15 minutes to see a patient.
This is just a snippet of the hundreds of conversations I
had at MedX. It does not really do justice to the wonderful interactions and
things I learned but I hope it provides a picture of how conversations can affect
the future of medicine – one conversation at a time. I know the conversations I
have had will stay with me for a long time.