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Posts tagged ‘Jeremy Pettus’

ONE Great Weekend.

Diabetes for 30+ years means you’ve earned a “legend” sticker.

“So what made you want to do the TCOYD ONE conference?” I asked the TCOYD team.

“We were sitting around one day having drinks and just said there is so much stuff coming out in the field of type 1 diabetes that we NEED to put on an event with the absolute best of the best speakers and invite every person with type 1 diabetes around the world who we can get the invite in front of,” said Dr. Steve Edelman, Professor of Medicine at the University of California San Diego and Veterans Affairs Medical Center.  He’s also the founder of Taking Control of Your Diabetes (TCOYD).  “Oh my god, the conference was an incredible weekend of palpable excitement in terms of learning the most up-to-date real information about managing diabetes but also the emotional outpouring was not anticipated or expected. Something I have never experienced in my personal or professional life.”

This is saying a lot, since Steve has been living with type 1 diabetes for almost 50 years.

Tricia Santos Cavaiola, MD and co-director of the TCOYD Type 1 Track, highlighted the differences between ONE and the other TCOYD conferences.  “The biggest difference with this conference was putting more emphasis on living life well with type 1 which is why we tried to make it a retreat in addition to the typical education component. Looking back on this weekend, my favorite part was just seeing how happy everyone was, from walking around the health fair, to huge turnouts at the group activity/exercise sessions, to laughing at the talks, to watching EVERY SINGLE PERSON walking around with a smile on their face. TCOYD conferences always leave me with a ‘feel-good’ feeling at the end, but this one topped them all.

Jeremy Pettus, MD (co-director of the TCOYD Type 1 Track), echoed Steve and Tricia, adding, “I think I’m just proud to have been a part in making it all happen!”

The TCOYD ONE conference that took place last weekend in San Diego, CA was nothing short of amazing.  PWD hanging out, learning from one another, and sharing their diabetes lives without hesitation or judgment is the kind of connection that benefits people’s emotional health as well as their blood sugar numbers.

Nothing leans into “good health” quite like “good friends.”

Ann Ryan Donahue, 46 years into her life with type 1 diabetes, said, “It was clear that this was a dynamic group of T1’s who have all learned to make something positive out of something negative … a room full of progressive, motivated, positive individuals with T1 … and what a great forum to share all the ‘tricks of the trade.’ This may rate as the ‘hungriest group begging for information’ that I’ve ever been a part of.”

I’ll second that completely.  In addition to giving a talk about my 30 plus years with type 1 diabetes, I lead two discussions about the mental/emotional health surrounding the issue of diabetes-related complications.  The stories that were shared in that room can’t be summed up in a blog post or a paragraph.  People were honest, and raw, about what they were dealing with or what they were fearing, and the connections in that room were instant and intense.  I could not be prouder of our community for coming together and talking about where their hopes and fears are rooted.  This is what it’s about for me; connecting with others in efforts to live big, and live well, diabetes be damned.

“It felt so great to be with so many people who understand and know how challenging life is with this condition,” said Julie Forsgren, living with type 1 for over 40 years.  And this was a theme among the attendees, the peer-to-peer connection between PWD.  “I loved how even the doctors and expert speakers were also type 1. It felt SO good to be among others who really get it! The food was a delicious bonus, too. It was so exciting to hear about the developments in improved technology from the CEO’s of the companies working on them. It was an inspiring and informative weekend full of impressive speakers. Such a great feeling of comfort and understanding being among my peers!

“When I looked up in yoga and realized that everyone in that space, at that moment was present with peaceful intentions AND diabetes, it absolutely took my breath away,” said Cynthia Celt, T1D for 20 years, about being part of the yoga group in the morning.  “It was one of the most awestruck diabetes moments I’ve ever experienced. There was no worry of a CGM alarming or the disapproving glances that sometimes accompany a yogi toting her phone into class. It was the first time I have ever felt 100% part of ‘the group’ rather than an outlier.”

Rachel Mercurio hadn’t ever met a person with type 1 diabetes “in the wild” before. “Words cannot adequately describe how incredible this weekend was for me. Before this conference, I didn’t know a soul who had T1 ‘in real life.’ Of course I knew other T1s were out there, but I have always felt like I was alone on an island. Hearing the CGM and pump beeps throughout the weekend was so comforting to hear. Warm, lovely people came up to me and introduced themselves to me. For the first time in my life, I was talking about diabetes without educating anyone about this disease, because you all get it. The presenters are true advocates. I knew this was going to be a great weekend, but I didn’t quite expect an impact of this magnitude.”  (And for the record, I had the honor of meeting Rachel and she’s a force.  And her neon yellow hair is awesome.)

It was called ONE but not because you’re the only one.  You’re ONE of many, and you are not alONE.

Thanks to the TCOYD for hosting this event, to Tandem Diabetes Care for sponsoring my keynote and breakout sessions, and to every person living with diabetes who came to find support, camaraderie, and the other ONEs like them.  See you at the next ONE!!

Hypoglycemic Blues.

This past weekend, I was in Omaha (pronounced in my head as “OMAHA!!!!” almost every time), Nebraska for a TCOYD conference, joining in as speaker for the event.

One of the topics in OMAHA!!!! that we talked about was the integration of medical devices, sharing anecdotal stories about life with out diabetes-related robot parts.  Panel moderator Dr. Jeremy Pettus shared a video he made about how using a continuous glucose monitor, illustrating the difference between catching a low when you’re deep in the trenches of it (whoa, 49 mg/dL) versus catching it when it first starts (like 8o mg/dL and dropping).

The ways a CGM has helped improve my quality of life are becoming hard to count:  I feel safer when I drive, when I sleep, when I was pregnant, when I am traveling, when I eat new and strangely-carb’ed up meals … and now I’m more appreciative of how it helps keep me from over-treating those frigging overnight lows.

Thanks, Jeremy, for taking the time to explain this CGM benefit while sporting your pajamas.  Bold move, doctor!

FFL: Social Media as Part of the Prescription.

At Friends for Life this  year, there was a special panel discussing “Social Media & The Monster Under the Bed: The Latest Thinking on Fearing vs. Embracing Social Media,” focusing on efforts to validate the role of peer-to-peer support in diabetes management.  Moderated by members of the diabetes online community, the panelists included:

  • Korey Hood, PhD – Associate Clinical Professor of Pediatrics at University of California, San Francisco
  • Jill Weissberg-Benchell, PhD, CDE – Associate Professor at Ann and Robert H. Lurie Children’s Hospital of Chicago
  • Barbara Anderson, PhD – Professor, Department of Pediatrics, Section of Endocrinology and Metabolism at Baylor College of Medicine
  • Jeremy Pettus, MD – Internal Medicine Physician, San Diego, CA

Pretty awesome panel (and the discussion was live-streamed – video embedded below).  The point of this discussion was to get health care providers talking openly and honestly about their thoughts on people with diabetes finding support online.  “In terms of how healthcare professionals view the DOC, I think that there are mixed feelings about it,” said Korey.  “I think that some can see the value in it and see it as an extra resource and others are a little bit worried about the information that individuals can take from the online community and whether it will be accurate and consistent with their recommendations.”

“What do we do to get providers using this [social media] more, I think it requires a change in mindset, using social media as another tool,” said Jeremy.   “We concentrate on using insulin or the pumps and CGMs, but we don’t really think of this as another way of of helping our patients reach their A1C goals.  As we all know, diabetes is a very psychosocial disease and we have a lot of tools to help people ‘get there,’ but there’s a big disparity between what we can do and what actually happens.  That’s kind of where I see social media and online support fitting in – taking what the providers can do and adding the support element to make sure it gets done.  I think of this as another way of reaching treatment goals.”

Barbara tackled the question of whether or not HCPs think support is important in terms of predicting or improving patient outcomes.  “I think the assumption that medical providers would think support is important – I wish that was right.  I think that what medical providers think is important is the algorithm that I’m giving you, or the prescription that I’m giving you.  Not that the reality is that it’s [also] the support.”

Korey added to that:  “I do work in changing patient behavior because it’s easier than changing provider behavior.”

Actually, in the meetings leading up to the event, the goal seemed to be to validate the role of the DOC in patient outcomes, but throughout the course of the discussion, it became clear that validation wasn’t ‘necessary.’  The fact that there were so many people in that room, talking about their experiences and how they’ve learned, grown, and benefited as a result of being involved in the DOC was enough.  The proof is in the people.

Jill summed up things nicely for me:  “Social media is here to stay.  It’s an amazing opportunity to meet with people who have the exact same experience that you have, who get it at a level that your family, no matter how much they love you, can’t get.  You get this sense of community that is impossible to get at your doctor’s office.”

Diabetes is a background issue.  The BEEP of the Dexcom as it alarms for a dropping blood sugar isn’t preceded by the loud scraaaatch of a record needle scraping across the vinyl, signifying a break in the soundtrack of our house.  And my insulin pump is simply something that I wear.  Except at Friends for Life.  There, a wailing Dexcom can cause seven different people to reach into their bags, furrowing for a jar of glucose tabs to offer up.  And my insulin pump becomes a show of solidarity.

This summer was my fifth Friends for Life conference, and I don’t like the view of my life without it.  For years, diabetes was the thing that made me different, and made me the odd one out in my elementary school, then high school, then college, and so forth.  But now, thanks to a flourishing diabetes online community and conferences that are centered around educational and emotional support for people with diabetes, diabetes is what makes me the same.  People I’d never know, or ever have anything else in common with become friends and a huge part of my support network in the context of living with diabetes.

The influence of the support of others who understand can have as much of a positive impact as anything else prescribed for life with diabetes – maybe more so.  Feeling emotionally capable of managing a daily, demanding disease is what keeps me doing what needs to be done, and staying adherent/compliant.  All aspects of my health are better for it.

Thanks to the panelists for raising their voices about this topic, and I look forward to watching conversations evolve.

 

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