Hi friends,
I get questions every single week from patients who’ve self-diagnosed, or received a formal diagnosis, yet have no one to treat them because of where they live. There just isn’t a ton of information out in the world…yet, to help people in the medical field help their lipedema patients. This results in what’s going on with most of us right now. We’re cobbling together patient stories, and supplements people are guessing on, to try and treat ourselves. We use videos of MLD from youtube that may or may not be right (guilty), buy all kinds of whacked out supplement mixes from who knows where, and are literally playing guinea pig with our own bodies. Seriously people, the world can do better than this. Eleven percent of women with a disease constitutes a need for research and treatment.
That’s why I’m SO thankful for the Lipedema Foundation, who is actually providing funding and a plan for research. According to the Lipedema Foundation’s (LF) Research Roadmap, published just in 2023, they show that even the number of researchers working on lipedema is still very small. According to the LF, there are 408 authors of 89 primary data and case report manuscripts (about lipedema) within the past five years, visualized as 43 collaborative clusters, the largest 2 each comprising 28 networked authors.” Compare this to say, prostate cancer research, which has 150,000 papers published on it. We need more people 1) researching lipedema and 2) treating lipedema consistently, based on actual research and data.
Photo courtesy of Lipedema Foundation.
One of the things we can do is to promote what training is out there, and what real research already exists. I can’t tell you how many times I’ve seen a speaker about lipedema stand in front of a room and literally Make Shit Up that is not based on research (sorry, Mom). Let’s just say I’ve had it happen within the last week, and I won’t go into more detail on who did it and where. Also, presenters, if someone asks you a lipedema related question and you don’t know the answer, it is BETTER to say, “I don’t know” or “I haven’t seen the research on that yet,” than to provide straight up misinformation. OK rant over.
So, all of that to say, here’s a course I found about lipedema for CLTs. I’m assuming PTs and OTs could also take this class. It’s inexpensive, and it was written by Susan Isaac, who is a PTA, CLT-LANA, WCC. I met her at the Fat Disorders Resource Society Conference in Cleveland in 2022. She works in a lymphedema wound clinic and started at Harrison Memorial Hospital. Having treated lipedema patients for many years, and even having some close friends with lipedema, Susan realized the need for this training to be out there, so she literally wrote a course for CLTs so they could familiarize themselves with Lipedema and the bandaging methods used for lipedema treatment. Her course is available through Monarch Consulting and Education.
I’m not getting paid for this post or anything like that. I just think it’s really important that professionals have access to research-based training, especially when it’s really limited.
If you’re any kind of a PT, OT, CLT or a Doctor of any specialty that sees women after the age of ten, learning about lipedema can help change a life. Please share this information freely! Lipedema is painful both mentally and physically, it can progress to immobility, and has a whole cohort of other morbidities that go along with it. Sadly (according to a research study published by the Lipedema Foundation) on average, women sought medical attention 17 years after first noticing symptoms and received a diagnosis 10 years later. (Source: Learning by Listening: Early findings from the Lipedema Foundation Registry survey, located at: https://static1.squarespace.com/static/5775899ac534a5e813c050db/t/6290d2cd923a0156d8fcea1e/1653658317504/LF_First+Look+Registry+Report.pdf.
Until next time, be well, and do all you can to make the world a better place.
Susan
