Stories That Deserve to Be Heard

I’m finishing up my review of the applications submitted for ePatient Scholarships to this year’s Stanford Medicine X conference. There were over 100 applications submitted this year, but only 35 scholarships will be given out.

For the people that applied, but do not receive a scholarship, please do not take this as the end of your journey. We all have stories that deserve to be heard. Maybe Medicine X 2014 will not be the your moment, but that doesn’t mean your moment will not come. There are so many platforms and ways to share stories; Medicine X is just one of them.

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Meet The Panel

Last weekend I had the pleasure of hosting a Google Hangout with the ePatients that will be featured on the panel that I am moderating on the opening day of Medicine X. We spent an hour or so getting to know each other and discussing potential topics for our panel. One of the things I really want to focus on is engaging with the audience. There will be microphones in the main room and questions will be fielded from Twitter throughout our 45 minutes, and I’m looking forward to the challenge of giving 4 ePatients their opportunity to shine while also setting the stage for the rest of the conference and giving people the chance to ask their own questions. It’s a lot to squeeze in, but it’s definitely doable.

I won’t spoil the planned discussion points just yet, but I want you all to meet the panel.

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Chronic Curve

Previewing one of the many ePatient perspectives that will be shared at the upcoming Medicine X Conference in Stanford this Fall, Emily Bradley is my guest this week. We discuss her journey with chronic illness and chronic pain including, but not limited to, Still’s Disease, acute idiopathic scoliosis, endometriosis, secondary fibromyalgia, and Chushing’s Disease. We also discuss the value of social media in sharing her experiences and connecting with others in the patient community. And Emily shares her motivations for attending and her expectations of the upcoming Medicine X Conference in Stanford, where she will be one of the featured ePatients. Enjoy.

You can follow Emily on Twitter at @chroniccurve and chroniccurve.tumblr.com.

As mentioned, you should really read Emily’s full diagnosis story at chroniccurve.tumblr.com/mystory.

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Diabetes Blog Week 2013 – Freaky Friday

I’m just going to put this out there, because you all were thinking it:

Where were we?

I’m at a bit of a loss with this topic because I think it’s silly to actively wish diabetes upon someone else, or a different disease to call my own. Diabetes is a bummer, but that doesn’t mean we have to be overly dramatic about it.

But at the heart of today’s prompt is the notion that we are not alone in the ‘people with something wrong with them internally, but are still good people inside and out’ group. As expected, I focus a lot on diabetes. It’s kind of a big deal to me. And while I recognize that diabetes isn’t the only chronic condition out there, I didn’t fully connect the dots until Medicine X last year.

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Patient Advisory Committee

A few weeks ago I was contacted by someone at Medivo offering me a spot on their Patient Advisory Committee as they jump into the diabetes app landscape. I initially ignored the email until I received a follow-up a few days later offering some additional information about what they were hoping to accomplish and what my role would be. Before I go on, I should provide a little context about my mindset with all this stuff.

I don’t have a need for diabetes apps. I understand their value and recognize their potential, but they just aren’t for me. I credit this largely to my comfort with my diabetes management. My A1c reports over the past year or so have shown consistent improvement. My diet (while still not perfect) continues to include a healthy portion of vegetables and fewer cheat days. And I’m slowly finding a workout routine that’ll bring balance to all of the blood glucose obsessing that I do day in and day out. Like I said, these apps aren’t for me.

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