Lipedema Source serves as a clearinghouse for updated lipedema information gleaned from numerous sources. My goal for the site is to be a community effort, with input from members of the lipedema community, to become a place to share current information pertinent to our community.
This site is intended to spread awareness about the disease and to be an educational site as well. I’m passionate about bringing lipedema into the public eye, and as a nurse and respiratory therapist, I want to educate about all aspects of the disease for both patients and their caretakers, to provide a “first stop” for newbies. Another goal is to attempt to include every resource available to provide one stop for all those affected by this disease.
I first learned about lipedema in 2015, at age 54, and was formally diagnosed with late stage 3 lipedema at age 55 by Dr. Karen Herbst. I had visited physician after physician in my 30’s, trying to figure out what was wrong with me – the discrepancy between my lower body and my upper body was strange, and there had to be something wrong. However, the only advice I was ever given was to go home and diet. I discovered the disease while surfing online. I found an article of a woman with lipedema and began shouting to my husband, “This lady has what I have!” I had never noticed anyone else having the features I had and was elated to find this, as none of the physicians I had seen throughout the past two decades in four different states could recognize it. I was so excited to see someone who looked like me! The article said lipedema, and it was through Facebook that I immediately located several online support groups. That was the start of my lipedema journey, to find info on Dr. Herbst, to find info on education, and to meet others with the disease.
I was also fortunate enough to find several other ladies in my area with lipedema, and we began a local group. It was at that time that I began gathering and recording all the info which was being discussed in our online groups and in our local area since so many had difficulty locating practitioners or therapists who were knowledgeable about lipedema – data in the way of physicians we’d come across who knew about lipedema, places we found to purchase wide-leg pants and clothing which fit, etc. This needed to be shared with others, so I started a small blog featuring this info. As I read through our groups, I saw questions being repeated over and over about certain items – compression, MLD, medications and/or supplements suggested by Dr. Herbst – and as a nurse, I began researching these subjects and writing about them, specifically to educate those new to the disease. I began expanding my search and am now collecting info worldwide.
I went on to dabble in website building and had a pretty good one built, when my host switched control panel software, and not only did I lose my site, my backup would no longer work. I changed hosts and began again, still in the building stage in a few places, but for the most part approximately two-thirds of the site is complete, although it will always remain a work in progress, as I’m constantly adding pertinent info as needed.
One of my goals for Lipedema Source is for it to serve as a “hub” for info on lipedema, to cater not only to those new to the disease but to serve as a resource for all patients and their caregivers. I would hope that the site will serve to promote lipedema awareness to the public, in the way of education and in the way of giving a voice to those patients who would like to share their stories. I would hope that it also will serve as a platform for the educators in our community – coaches and therapists – to publish articles pertinent to our disease.
The site features what I’ve found to be the most important resource of all – lists of therapists and physicians and surgeons who are knowledgeable about lipedema. These lists are kept current and are constantly updated with the help of submissions from ladies in our community. We all have been through the angst of not having a practitioner who understands lipedema or can even recognize it, so finding someone knowledgeable is the most crucial step. This one resource requires input from everyone in our community, as this is how each of us began our journey; I encourage everyone to stop by the site and check to see that any physicians, surgeons, and/or therapists you’re familiar with are listed there, and if not to contact me so that I can add them. Also feel free to contact me with any stories or articles or anything you’d like to publish.
It is my sincere hope that there are many who are able to benefit from this site. Please feel free to contact me with any questions or to pass along something for publication. Please know that Lipedema Source is your site!