lipedema experts

Heart-to-Heart Event Conference was Everything Expected, and More

Heart to Heart Event Conference - An Honest Review

Heart-to-Heart Event Conference was Everything Expected, and More

by Christine Halvorson

I totally expected to be bored at some point during a 3-day online conference recently.  (It’s me. I get bored easily.) Boy, was I wrong. Moments into the first presentation, I knew I didn’t want to miss one second, and I attended from 10 a.m. to 5 p.m. each day with no regrets.

Attending the Lipedema Simplified event, “Keto and Beyond: Customizing Your Plan to Joyful Nutrition” was money well spent. I wanted to learn to customize my ketogenic way of eating, meet others with lipedema, and begin long-range planning for a condition that dropped on my head with a diagnosis about six months ago.

The conference offered so much more. About 130 participants attended each day to learn nutrition strategies and the science behind those strategies. We were to recognize what might be holding us back and identify action steps to overcome hurdles in managing this chronic condition.

I’m thinking this one tip alone would have been worth the price of admission: add pickles to your Keto Cheeseburger Casserole.

Nutrition was the focus, but my notebook became jammed with so many tidbits: A tip about electrolytes that landed just where I needed it; strong connections to fellow lipedema women that were fostered digitally, which one wouldn’t think possible; inspiration and hope offered by the expert speakers; and news of the lifeline that is TRIBE, the supportive, paid community sponsored by Lipedema Simplified.

Speaker Carrie Reedy, a medical nutritionist who coaches for Lipedema Simplified, explained how a ketogenic diet (keto) appears to improve the “uptake” function of the lymph vessels, which is what goes wrong in women with lipedema. Keto may also reduce the thickness of soft tissues, which contributes to the common pain or mobility issues lipedema women face. She encouraged attendees to take ownership of their own dietary choices, and to envision scenarios where they can confidently navigate their food situations.

Nearly every expert speaker (12, not including staff) reinforced what has become a Lipedema Simplified mantra: “N = 1,” which translates to understanding that every body is different and will respond differently to the diet, exercise, and myriad of therapeutics available for lipedema women.

Jen Unwin, a clinical health psychologist, presented “Breaking Free from the Shackles of Carbohydrate Addiction: YES You Can,” citing data showing that overcoming addiction to carbohydrates can be as or more difficult than breaking a drug or alcohol addiction. Dr. Georgia Ede, author of Change Your Diet, Change Your Mind,  reminded participants that lipedema is, at least in part, a problem with inflammation, and if one’s limbs are swollen, one’s brain likely is, too. She identified the many ways the brain responds to metabolic disturbances in the body.

Dr. Matthew Carmody, a retired doctor who was instrumental in founding Lipedema Simplified, tackled the timely topic of Semaglutides, relatively new medications used to manage diabetes and obesity. In “Magic or Malevolent? -The Semaglutide Revolution – Can it Work for Me,” he identified how lipedema patients may be helped with this drug.

Each presentation was followed by a Q&A time, and opportunities to just chat, or “schmooze” (as we all came to call it) with staff researchers like Siobhan Huggins and Leslyn Keith, who seemed content to listen forever. By the end of the conference, it felt like these two experts had become our new BFFs. Leslyn cautioned us not to become zealots who kick ourselves if we aren’t strict enough about keto. Control your carb intake, she said, then prioritize protein, and fill in with healthy fats.  She reminded us (as did others), “Nobody needs carbs to survive.

Siobhan Huggins blew my mind by suggesting we could conduct nutritional “experiments” on ourselves. For example, we can experiment with our satiety levels by increasing fat intake and then incrementally reducing it. The test might help identify what feels best in terms of weight, swelling, and pain, she said.

Two attendees were chosen to participate in Laser Coaching, in which Lipedema Simplified staff heard the women’s diagnosis stories and treatment challenges. With the rest of us listening in, the coaches offered a plan to address those individual issues.

Social connections came through informal chats before each session, and through attending an exercise or meditation session to start each day. Attendees also selected a digital room in which they could chat with others on specific topics, facilitated by “Heart
Guides” who had been involved with Lipedema Simplified as coaches or volunteers.

In addition to expert advice and data, my notebook is filled with lists of websites and apps to try. I will never get through them all. They include sites that can do mobile or mail-in blood tests or help you find the best deals on keto groceries. Throughout the
three days, conference organizers offered ways participants could win prizes, including a copy of the forthcoming, first-of-its-kind clinician’s textbook on lipedema, “Lipedema Principles and Practices of Diagnosis and Treatment,” edited by Stanley G. Rockson,
MD, Leslyn Keith, OTD, CLT-LANA, and Catherine Seo, PhD, in collaboration with global experts.

Time well invested, and I will be attending additional events. But for now, I’m implementing what I learned and continue the conversations with others in the TRIBE.

About Christine Halvorson

Christine is a writer by trade and has worked in newspapers, publishing, magazines, and freelance. In 2004, she pioneered the role of Chief Blogger at Stonyfield Farm, the yogurt company, which led to launching her own social media agency, back when nobody really knew what was coming down the social media pike! She retired in 2023 to write for herself.  She and her writer husband live in Peterborough, New Hampshire.

Join our newsletter here and be a part of our supportive and accepting community.