Awareness Burst All Over in June
June was bursting out all over with awareness activities as Lipedema Simplified and the lipedema community participated in the worldwide effort to bring recognition to this condition that affects an estimated 11 percent of women.
The Heart-to-Heart Circles—in-person meet-ups staged across the country—stood out as the…ahem…heart of the awareness activities. New friendships were formed in keeping with the C.S. Lewis quote that adorns the Lipedema Simplified website: “Friendship is born at that moment when one person says to another, ‘What! You too? I thought I was the only one.’”
At least 17 in-person Heart-to-Hearts happened (and ONE[?] Online one), with hosts reporting afterward about the glorious connections made. In my own Heart-to-Heart meet-up in New Hampshire, where we spent over two hours together, we kept circling back to the mental health challenges of managing this condition, and to the pressing needs of taking care of ourselves while also having other caretaking responsibilities. (For women, it is ever thus, right?)
There were tears, and there were laughs. One participant wanted to come up with a snappy comeback for when well-meaning people told her to “just get out and walk more.” She wanted to—but did not—respond with, “Why don’t you try strapping a 5-gallon jug of water to each thigh and see how walking works for you?!”
By mid-Awareness Month, my brain and my heart were overflowing.
Lipedema Simplified sponsored two special webinars with expert guests. Dr. Nadir Ali presented a mind-blowing webinar on the science behind carb addiction and how to beat it. Second, Bryan Hayward joined in for a webinar on “Lipedema Pain Relief,” which explored some anti-inflammatory strategies for managing lipedema pain. Our own Catherine Seo & Lisa Duerre later released a free e-book on the same topic: “Hidden Pain: Lipedema’s Impact on You, Your Life, and Your Work.”
But wait, there’s more!
Catherine and Lisa, who has been hosting a weekly “vodcast” about lipedema in the workplace, brought in special guests for the month, including advocate Diana Dimmock, and podcasters Shawn Bigby and Ashley Fisher who produce “Lipedema Mamas.” They also spoke with Patti Cornute, founder of Lipedema Fitness.
Special guests were also featured on Gail Straker’s weekly “Lipedema Wellness Conversations,” including friends and coaches Bryan Hayward and Adie MacKenzie. Susan O’Hara, founder of Legs Like Mine, appeared and announced the formation of a new advocacy organization, The American Lipedema Association, whose aim is to address public policy and medical school’s lack of training in lymphatics, for example.
Catherine and Lisa also were featured guests on podcasts and webinars staged by other related organizations.
Lipedema Simplified invited the community to respond to Dr. Stanley Rockson’s request that lipedema women participate in a survey by the new NIH Commission on Lymphatic Diseases. Dr. Rockson is co-chair of that federal commission, which is charged with guiding the understanding of and future research on lymphatic disorders. The time to respond to that survey has passed, but Lipedema Simplified made several reminder posts about it throughout the month.
Dr. Matthew Carmody, MD, and Leslyn Keith, OTD, CLT-LANA, presented our new paper, “A Proposed Framework for Research Case Definitions for Lipedema” to the Obesity Medicine Association on June 18. By the way, that paper has now been turned into a 1-page handout for patients to share with providers and others, and from which providers can get a quick overview to aid in diagnosis. [Where/how to get?]
Lipedema Simplified announced its next 3-day, virtual conference coming in September, “Your Roadmap to Living Well,” with early bird pricing offered throughout the month.
For me, it was gratifying to end the month with a notebook full of new links to follow, new organizations to investigate, resources to read, treatment modalities to try, providers to research, and, most importantly, new friends who “get it.”
With those many scribbles in my notebook, I was reminded of what happens when I partake in one of my hobbies—genealogical research. When you’re researching your family tree, you basically fill it in branch by branch, but the kicker is that you finish one branch and LO!…there grows another one! And another! And so on, and so on.
We’ve grown awareness this month, but we’ve also grown—and continue to cultivate—one well-rooted and gigantic family tree, perhaps one with the heart-shaped branches that make up the lipedema community.
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.