Hi Friends!
I’ve just returned from my second FDRS conference. This one was in Atlanta and had numerous patients, therapists, surgeons, clinicians and vendors in attendance. It’s a great event to learn about all the new research initiatives and outcomes related to fat disorders, of which lipedema is the largest group represented at the conference.
Another great part about the conference is that hundreds of actual patients in varying stages of the disease attend. So there are absolute new people there who are in stage one and just learning about the disease, all the way to seasoned attendees and ladies who have incorporated mobility aids as part of their journey into the later stages of lipedema. The patients bond and discuss challenges, and have a sense of safe community once a year, where all are accepted and accommodated. It’s pretty wonderful.
This year I participated in the fashion show again on Friday night. I had the morning free, so I did really strong makeup and had a fun photo shoot with a professional photographer at the Gurl Mob Boss museum. It was a fantastic experience and I think the photographer taught me a lot about simple poses to help make better portraits, so that was a good investment.
I saved my fancy makeup for that first evening, where I modeled the actual bathing suit from my Aqua Therapy for Lipedema and Lymphedema Book, which was also given to every attendee free of charge. I also modeled this new button down denim dress that I’ve been searching for forever, from Ashley Stewart. I’ll see if I can find a good picture of this outfit because I love it. I didn’t realize the important of the fashion show until this year. This show is made up of women in varying ages, interests and stages of lipedema, and a ton of work goes into curating the show’s collection (kudos to Beth Rylaarsdan, aka CurvyGirlBeth, for wrangling all us cats).
And the audience members really get a lot of motivation an inspiration to see ladies like them looking pretty amazing and feeling good. For many of the participants, getting on stage and then talking about their outfits is absolutely terrifying, and the feelings of accomplishment afterwards for the models is pretty awesome too. I have long gotten over my fear of public speaking and have my own goals for this show, one being learning how to walk with more confidence and show the clothing properly, and how to be more concise when I grab the microphone and tell what folks need to know about the fashion itself. I think I did a good job sharing about my footwear selection (Aravon sandals), and brought a new brand to many of the participants who are footwear challenged like me. I watched a couple of videos on how to turn in a non-pageant catwalk (who knew they do different things for pageants and fashion – I did not!), and I practiced a little bit to make sure I was modeling the clothes properly. So that challenge was really fun for me.
As I mentioned, this event was really important to me as an author specializing in lipedema. Every doctor, patient, therapist, and vendor was provided with my book and had access to a physical and digital poster presentation, because there’s some really important information in it, presented in a new way that can really help patients struggling with swelling. If you have lipedema, be sure and check it out.
On Saturday I had a long breakfast meeting with the members of the Lipedema Education Group, whom I am totally honored to be with. They literally are the force driving research and treatment of lipedema. We discussed the focus of the LEG and some short-term strategic objectives we can accomplish to move towards the focus area. We’ll meet again tonight to discuss the outcomes.
And then finally Saturday brought on the research presentations, most of which I missed so far because I needed to travel home for my daughter’s senior prom. I’ve watched a couple of the replays so far and am impressed not only with ongoing research but with new researchers who are bringing about new enthusiasm for finding a cure for lipedema. I’ll keep posting updates as I unpack the research portion. I will note that the FDRS prohibits photography of the slides, but they will eventually release polished videos on their YouTube site, which is one of the first places I visited when I figured out I had lipedema.
When I got home and settled back into the conference website, I watched the Patient Perspectives of four different patients, two of which share stories similar to mine. Jenn Sephton especially has had similar outcomes, with her legs becoming smaller, lymphedema remaining, needing more surgeries, and exacerbation of hypermobility due to removal of fat pads. Like me, she’s now retired on disability and going to regular physical therapy to try to offset the hypermobility by strengthening muscles where the connective tissues have permanently overstretched. I really appreciated her candor during her presentation. And then Cara Cruz also resonated with me a lot. Her stories of fat bias and finding a doctor who understood were my story too, growing up on diets, just so much were similar to mine. She was funny and entertaining, which drew me in even more. Next year I want to be in person for the patient perspectives.
So, all in all the weekend was a great success. I am already planning to attend next year in STL (April 19-21, 2024) and am figuring out now how I can make my time there the most effective for me personally and professionally. I’m planning to do a booth there with my calf boots designed for lipedema ladies specifically, fingers crossed!
Thanks to everyone involved with FDRS. It makes a difference. If you’re a patient who hasn’t been, or a vendor who has products to help the lipedema community, I invite you to come next year. It’s a fantastic and uplifting experience!
Be well!
Susan
