Last month, I was able to attend some extremely informative and interesting events focused on Lipedema, a condition caused by abnormal accumulation of fat under the skin that can be painful, cause immobility, and affect normal lymphatic function in the body.
Lipedema is sometimes confused with Lymphedema, though they are different conditions. However, as the events clearly pointed out, many patients who have Lipedema also battle Lymphedema and venous complications such as Chronic Venous Insufficiency (CVI).
This blog outlines various aspects of these events, including topic overviews, lessons learned, event formats, and some of my own opinions.
If you are a Lipedema patient looking for more information and resources, or a physician or clinician treating Lipedema patients, please contact me to discuss any questions or additional insights.
Lipedema Simplified’s “Heart to Heart” Event (Virtual)
In early April, Lipedema Simplified offered a three-day virtual event titled “Heart to Heart”.
Educational sessions on the lymphatic system and factors unique to Lipedema, along with support interactions, nutritional information, pain management, and more were discussed. It was an amazing experience!
For the last couple of years, I have been engaged as a Health and Wellness Coach with Lymphedema Simplified. I became interested in this group when I attended one of their semi-annual virtual events, filled with practical information for management of Lymphedema and Lipedema, along with strategies and support for the psycho-social aspects of these, and frankly any, chronic conditions. Impressed and excited by the warm personal interactions in this large virtual space, I was also intrigued by the international nature of the event. I wanted to join the Tribe! I am a Lymphedema, not Lipedema patient, but I have professional experience and training that can be useful. Now, serving in my capacity as a Health Coach for the group, I learn from as well as provide information in the educational sessions that are on offer.
Among the “Heart to Heart” sessions I was able to attend was a presentation on the Polyvagal theory, discussing the different aspects of the Vagus nerve and the particular effects of its different branches. The ability to encourage our calmness, our parasympathetic “rest, digest and recreate” aspect of our nervous system with various simple activities such as ear pulling and/or humming, that is some nice practical self-care information. Another session on Body Peace explored the all-important ways to help develop self-acceptance and let go of self-shaming about the physical factors we are living with. Both of these useful topics address the need to manage the stress and/or anxiety that accompanies chronic conditions, something that all patients must navigate, and these sessions gave some very practical information to assist in that quest.
Even if a patient has been able to engage in Complete Decongestive Therapy (CDT), the educational value of hearing more information on how that set of treatments applies to an individual with Lipedema is significant. Those who have had clinical care for this diagnosis often miss or overlook a lot of the recommendations for self-care and condition management. There is simply too much information being offered during a 6 to 12-week episode of care that includes a lot of hands-on work, education, therapeutic exercise, and measurement-taking. It is so useful to hear about ways to manage these chronic conditions and improve one’s quality of life while interacting with others who are struggling with the same things.
Platforms that allow sharing about which garments or devices work best for each participant, what other practices are supportive to their wellness goals, and what nutritional approaches have been most helpful are sometimes more impactful than hearing this from your medical professional. As a therapist, I have learned a lot from listening to the patients! As a patient, I have done the same, and feel less alone with my own Breast Cancer Related Lymphedema. So, my overall response to these events is quite positive, and these are a few aspects of this most recent one that particularly got my attention.
There has also been recent discussions about the cross-over in patients between Lipedema and Lymphedema. With the recent release of AIROS’ new 8P pump and pants garments that treat swelling in the legs and abdomen, Lipedema patients with lymphatic disorders can potentially now be treated by AIROS. I am very excited about this long-anticipated addition to the AIROS Medical product line, particularly suited to the needs of Lipedema patients. I believe it will be a great resource for so many of those I coach and to whom I offer care.
For those who want to learn more, there is much information on the Lipedema Simplified website, and one can soon sign up for access to the recordings. There are many more available in addition to this most recent event, and there are always new opportunities to sign up and learn and become part of this community. I think it might be of interest to those who struggle with Lipedema or wonder if this diagnosis could apply to them.
Fat Disorders Resource Society (FDRS) Conference (Atlanta, GA)
A few weeks later I attended a conference that I have been hearing of for several years, the Fat Disorders Resource Society (FDRS) conference, which was a hybrid event held in Atlanta, GA.
I’m very glad that I had the opportunity to go. I loved interacting with the 150 or so attendees present and hearing from those who were participating virtually.
I was delighted to see many of the Certified Lymphedema Therapists (CLTs) and other colleagues that I have met at symposia and conferences over the years at this event. This past year I’ve learned a lot about surgery for lymphatic conditions, and I got a great deal more information about surgical interventions for Lipedema from those surgeons specializing in this, as well as hearing from patients who have been through it. Liposuction is the main one, but also some skin reduction depending on the patient. Most of these reports indicated that surgery can be a powerful quality-of-life improvement approach. I am very happy to know that this can be so. I have seen this positive result in some of my own patients when they have gone to surgeons who specialize in lymphatic surgeries. I have, however, also seen those who, not being aware of what Lipedema is or knowing that this diagnosis might apply to them, have had liposuction for cosmetic reasons with surgeons not specializing in lymphatic concerns. Some of these patients have had very unhappy outcomes with increased difficulty managing swelling and pain.
Most of the educational sessions were packed into a single day and presented on Saturday, after a lovely reception, welcome address and fashion show kicking off the event on Friday evening. It started off with a Research Roundup presented by the Lipedema Foundation, which discussed how to determine the quality of research when seeking information on the internet regarding Lipedema. As is true for so many diseases and conditions that are not well known in the wider medical community, it can be very important for those of us who are trying to be well-informed patient consumers to have an idea of how to judge which information we encounter should be trusted and embraced, and what should be rejected. All of us can find conflicting information when falling down rabbit holes on the internet!
Following this opening, we learned more about Dercum’s Disease, a condition in which a patient develops painful lipomas (fat nodules) and can co-exist with and has many similar symptoms to Lipedema. Dr. Karen Herbst, who has done so much research in the field of Lipedema and other fat disorders, presented information regarding the genetic factors involved in developing this. Later we heard case presentations regarding some patients that have developed Dercum’s after a COVID infection. It seems that there may be some autoimmunity component involved in developing or the exacerbation of Dercum’s.
Later Dr. Herbst presented another session that made a case for Lipedema being caused by a subclinical compartment syndrome, which I found fascinating. The idea that some of the fascial compartments of the leg can be stressed by fat buildup adding to pressure on venous and nerve structures made so much sense. It suggested so many beneficial manual interventions and I found a lot of validation for the work I do with my patients in this talk. And it helps me understand better why skilled lymphatic-informed liposuction for some of these patients can be so pain-relieving.
In general, I would say that this was a very patient-centered conference. The day was filled with information that can be helpful for therapists but especially for patients who are now or are seeking to become activists for increasing public awareness of fat disorders. We learned about the expected upshot of the passage of the Lymphedema Treatment Act which will go into effect next January 1st and will create a category in Medicare to cover compression garments, which have not been previously covered for those with a Lymphedema diagnosis, so frequently secondary to Lipedema. We also got a lot of information about what the benefits of these compression garments are and how they are selected per individual patient’s presentation.
Information on the benefits of compression also addressed the use of Pneumatic Compression Pumps and several options for these were on display. Our new pants product will be particularly useful to those with Lipedema, but many patients are also using a single leg device depending on their situation.
We heard that a Lipedema Patient’s Bill of Rights is being advanced, we learned techniques to calm our nervous systems which can help reduce our pain, and we heard quite a bit about differing philosophies from specialist surgeons who treat these conditions. A patient considering surgery for a fat disorder may want to review all of these thoughts and approaches to decide with which provider to work.
On Sunday, I was most impressed with the presentations made by patients themselves. The journeys of these individuals, dealing with pain, discrimination and disability, and the way they have come to terms with their challenges and created community and improved quality of life; these were inspiring stories. There were lots of tears in the room during these talks.
This was a massive amount of activity and information packed into a basically 48-hour period! My brain was so stimulated I got very little sleep, thinking over and over about the details learned. I hope that any reader who would like more detail about these diagnoses will go to the FDRS website. I don’t know if the conference recordings will be available for purchase after the fact, but I know that a few presentation materials from the previous year’s conference have been publicly posted such as those from the Lipedema Foundation.
This topic is deep, and I am only scratching the surface here on Fat Disorders and what I have learned about them. There is so much more I want to discover, and I know the more I learn, the more I will be able to help my patients. I will plan to attend this conference again in the future.
If you have a personal story, or information to share on these topics, please contact us! I would love to hear from you!
Photo Credit: Fat Disorders Resource Society (FDRS)
