b' I continue to attempt to manage this disease everyFUTURE DIRECTIONSsingle day of my life. Although I have been reminded time and time again that it could always be worse,Research Directions: Focus on new diagnostics, there are days when it feels like there is nothing worse. molecular, genetic (cell-free DNA), humoral factors, I still, 15 years later, have days where I am pushed toand imaging techniques 35,36 .the edge. Days when I come home from work andFunding: Advocate for more research dollars cant use my hands, or even get my clothes off because I have ballooned up so much over the day. designated for lymphedema (LE).I let myself cry on these days because no matter Education: Emphasize the importance of educationalhow much you try to look on the bright side, it is reform in the lymphatic community and healthcare.hard to live this way.AMANDA: Since 2002, I have battled an incurableACKNOWLEDGMENTSillness known as lymphedema. At the time ofWith heartfelt gratitude, the Lymphatic Education & diagnosis, little information was known about Research Network (LE&RN) recognizes the Centerstreating this condition. The resources to maintain thefor Disease Control and Prevention for its generous condition were expensive and did not provide a viablecommitment and support in educating and advocating solution. Not only was I permanently disfigured, I wasfor those living with lymphedema (LE) and other traumatized to learn that there was nothing I could dolymphatic diseases (LD). The federal grant award as about it. Along my journey, I became a mother in 2005part of the Expanding the National Approach to and again in 2007. Becoming a mother has been myChronic Disease Education and Awareness initiative greatest accomplishment. That being said, trying torepresents a significant opportunity to further the take care of others is challenging enough, not toLymphatic Education & Research Networks missionmention the added demands of having a chronicof advancing research and education about lymphatic illness. Staying active, eating healthy and makingdiseases, including lymphedema and promoting a healthy lifestyle choices is something I strive for on abetter understanding and improving the management regular basis. As a busy mother who works full time, of these diseases. it is not always easy to stay committed to my regime. Through my own personal tribulations, I have Furthermore, we thank all our community members managed to significantly reduce my edema to thewho volunteered their time to enroll and participatepoint it is almost a thing of my past. Currently, in the LE&RN Global Registry for Lymphatic Diseases I am a motivational speaker, lymphedema warrior, and/or the 23-item online survey. We thank the a certified personal trainer, and an all-naturalscientists and clinicians who work tirelessly to find bodybuilder. I coach, train, and speak worldwide toimproved lymphatic therapies and cures.help empower others and take back their health.KARA: I have been diagnosed with lymphedema andYour contributions are what makeslipedema. Lipedema is a chronic medical conditionour data stronger, our understandingcharacterized by a symmetric buildup of adipose tissueof the lymphatic system clearer, and what (fat) in the legs and arms. The adipose tissue isdrives new therapies and technology.different from regular fat. It is immune to diet andKnowledge is power. exercise. Lipedema is usually confused with regular obesity and lymphedema. I am glad I received a diagnosis in 2016. I have had swollen legs and thighsGrant Primary Investigator: William Repicci, M.A.all my life and always felt like it was my fault, especiallyResearch Primary Investigator: Stanley Rockson, M.D.when puberty hit. My lipedema progressed even moreResearch Team: Kimberley Steele, M.D., Ph.D.; Fabrice then. I am glad that I have the knowledge of my twoBernard, Ph.D; Catharine Bowman, M.S.conditions. I have taken my health into my own hands Administrative Team: Steve Palmer; Phyllis Fried;and havent allowed my two conditions to stop meAaron Rome; Sara Sapp, M.S.from enjoying life. My lipedema in my arms and thighsDesign: MDM Graphic Designhas progressed a bit more, but I am thankful to God that I am still mobile. Just remember to have faith,Special thanks to our partners:educate yourself on your condition(s), and focus onCenter for Lymphatic and Venous Disorders, living a healthy and happy life. Stanford University School of MedicineThese stories and more can be found at:American Society of Breast Surgeons (ASBrS)https://lymphaticnetwork.org/living-with-lymphedema/ American Venous & Lymphatic Society (AVLS)your-stories/ American Venous Forum (AVF)|National Indicator Report on Cancer-Related Lymphedema (LE)|18'