Hi friends!
It’s been almost a week since I was able to attend the Fat Disorders Resource Society 2022 conference in Cleveland. I’ve dribbled a few pieces of research information that I was able to pull easy bits out of on some of my social feeds this week and have read through some of my complicated notes a few times and I’ve made a few videos on my YouTube Channel (youtube.com/c/legslikemine).
Here’s an overview of things I learned, based on my handwritten notes:
- So much new research has occurred in the last four years on fat disorders. It’s definitely a growing area (finally!)
- They are looking at platelet and possible drug treatments for anticoagulation for potential treatment of lipedema
- There was a pilot study about sodium levels in lipedema tissue, and now there is opportunity to be part of a larger study. The early findings showed tissue sodium is high in lipedema patients and physical therapy (simple stuff) made a difference in pain and sodium levels.
- There are several genes being looked at for fat disorders, and there is free genetic testing available for FML with a questionnaire to fill out to see if you qualify.
- There is a blood pressure drug that treats leptin receptors, and that may be helpful for lipedema patients as we have excess free leptin in our systems.
- Mast Cell Activation Disease causes inflammation and it may be related to lipedma. There is a workup that can be done to test for MCAS and also some drugs that help with MCAS inflammation. Also there are triggers to avoid inflammation, including certain foods, and stress. My notes in this area are hard to explain, so really watch this video when it comes out.
- There is a new lipedema group forming, but it doesn’t include patients in the group. Also they have different beliefs about what lipedema is, and what causes it. They seem to be based on different research that doesn’t align with the standard of care for lipedema in the US.
- Indocyanine Green testing can show how the lymphatics are flowing. Research shows you need both the current and delayed tests to truly show. After waiting many hours, you can see patterns that the ICG flows in and that tells a lot about the patterns and what’s going on in the lymph system. Don’t settle for just the immediate ICG test, or even the short term wait. Ask for the long wait one if you’re going through the pain and hassle to have the test.
And more. Please watch the FDRS youtube channel to see the real presentations and take your notes. There is hope for treatment and cure for us yet!
