Cherry Hill, NJ
Participating in the NLN’s Lymph Science Advocacy Program (LSAP) has been a goal of mine since I first learned of the program in 2010. Other life events kept me from being able to participate in 2010 and 2012, so I had my sights set on Washington, DC, and was honored to be selected. I have both lipedema and lymphedema, and I am a weight loss surgery patient, so my primary interests are in those areas. But as an overall advocate, especially in regards to insurance coverage, I understand the importance of learning about the various types of lymphedema and treatment options.
The 2014 LSAP brought together a diverse group of patients and caregivers. Sharing our stories with each other not only strengthened our networking and advocacy capabilities, but also revealed the similarities in our experiences. Unfortunately, those similarities are difficulty in getting a timely diagnosis and treatment challenges.
During the opening session, I felt an overwhelming sense of hope as I heard Saskia announce there were more than 900 medical professionals in attendance. Imagine so many professionals devoted to the research and treatment of lymphedema—yet the reality from the patient perspective is a lack of knowledgeable providers and accessible treatments. There is a lot of progress being made, but still a very long journey ahead.
My conference experience began by volunteering as a patient for the Jobst Elvarex “Advance Fitter” course. I have worn custom garments for a decade and know the importance of a properly fitted garment, as well as the challenges that arise when measuring complicatedly shaped limbs.
I was very interested in the opening keynote speech by Linda V. Tiano, Esq., as I am currently working on a master’s degree in health law. Other highlights of my conference experience were the following sessions: “Understanding Lipedema, Therapy, and Functional Restoration for Individuals with Lymphedema and Morbid Obesity” and “Reimbursement: The Political Side of Lymphedema.”
Overall, the conference provided me a wealth of new knowledge to share with the community with which I am involved and expand my advocacy efforts to reach more patients.
Cherry Hill, NJ
The NLN conference met and exceeded all my expectations with the wide selections of lecture sessions, wide range of vendors in the exhibit hall, and posters that were displayed in the main entrance of the conference. My participation in the LSAP preconference orientation paved the way to the conference. LSAP is a training program for advocates for research and education about lymphedema. A series of webinars were held prior to the conference with new LSAP members and previous LSAP graduates. Since the conference was tailored to the medical profession, these webinars were well-orchestrated and designed to expand our knowledge of medical terminology and concepts.
Before my arrival at the conference, my experience with lymphedema was confined to my own experience with lower extremity lymphedema. The only sources of information regarding lymphedema were provided through
my own research and information that I acquired from my therapists, who provided treatment and resources to control lymphedema symptoms.
As a first time attendee, I walked away from the conference with new information and general knowledge about lymphedema and lipedema. The conference provided a plethora of information that otherwise would have taken me years of searching for answers. In addition, the conference provided an opportunity to network with researchers and medical professionals, as well as vendors and fellow LSAP participants. The specific sessions that I chose to attend included “Exercise Concepts & Clinical Applications, Best Practices: Functional Outcome Measures and Documentation” (Hayes, Smith; US) and “Case Studies: Gynecological, Torso, Genital” (Kepics, Spinelli; US). After attending the NLN conference, I am now armed with the general knowledge to venture out and advocate for more education, research, and other initiatives that will shape change in the way lymphedema patients receive information about their condition.
San Francisco, CA
In anticipation of the conference, we LSAPers participated in three pre-conference webinar discussions, organized by Saskia Thiadens and delivered by Drs. Kathleen Francis and Joseph Feldman, and LSAP alumnae Jan Hasak and Bonnie Pike. These sessions prepared us for the wealth of information that the conference would offer.
The NLN Conference is a medical conference, accredited for CME, where top clinicians, investigators, surgeons, and therapists present research findings and exchange ideas. Their presentations reveal visual and statistical details that lay people might not fully understand. My graduate studies included enough quantitative analysis and technical communication theory that I could appreciate what I saw. I confess, however, that I’d never before viewed multimedia excerpts of surgical procedures. New developments by so many innovative healers offer great hope and opened my eyes to possibilities for improving the condition of lymphedema patients. Patient compliance came up, too; we patients need to follow orders.
In the exhibit hall, I met welcoming vendors who discussed the many types of garments, bandaging, and therapist training programs available. In that nexus of activity, I also found equipment manufacturers, member service organizations, and firms that deliver all the supplies and equipment, handling whatever insurance coverage there might be, to help us navigate the complexities of coordinated care. Two major hospitals were recruiting for trained lymphedema therapists—this is a growing field! Next to the NLN’s space, the Nederlands Lymphedema Network had a table where I found a touching book of photo-essays, Impressed by You, about patients like us.
Every morning we met for breakfast with a faculty mentor. Our cohort bonded, sharing stories, frustrations, solutions, and support. I returned home humbled and inspired, with an expanded perspective on the field and my own condition. Let us all work together!
Wow! What a conference! I would like to thank Saskia and the NLN team for putting on another amazing conference. Being an advocate for my daughter with primary lymphedema has inspired me to spread my advocacy to others in my community who suffer from lymphedema. Being accepted into LSAP has provided me with knowledge and experience I can pass on to my lymphedema community. The conference was full of new science that gives lymphedema patients and caregivers hope. Sitting through plenary and instructional sessions was truly an eye-opening and fulfilling experience. It’s not every day that patients and caregivers are able to hear about the newest technology or theories being shared. It not only inspired me, but also gave me encouragement to take back to my community.
The exhibit hall was one of my favorite parts of the conference. All the exhibitors were really welcoming and open to sharing their products and tools. It was great seeing the shift from having a few options of garments and other products, to having many options depending on what works best for that individual. I would also like to send out a huge thanks to the mentors who met with the LSAPers at breakfast every morning. Dr. Kathy Francis, Michael Bernas, Dr. Jay Granzow, and Dr. Nancy Hutchison were phenomenal mentors. This was a great time to debrief, ask questions, and seek others’ opinions. I am excited to bring back all of the new information I learned from this conference and from LSAP and share it with my lymphedema community. I hope to help promote awareness, help patients with prevention, and be able to prolong the lives of people living with lymphedema. I know I can work on all these things with the information and experiences I was given at the conference. I am looking forward to the 2016 conference and excited for more progress. Thanks again to Saskia and the NLN.
When I was first diagnosed with primary lymphedema at fifteen, a slew of emotions engulfed me. Fear, sadness, confusion, and aching loneliness. I had never met anyone else with the condition, so there was no one I could talk to who empathized with my pain. My friends were supportive, but did not understand what I was going through. I could talk to my parents, but tried to avoid it. I did not want to add to their misery.
As my lymphedema improved with therapy and compression, my happiness returned, but there was always a lingering melancholic shadow. My participation in LSAP marks the first time that cloud dispelled.
Through LSAP I not only gained friends who understood my mental and physical pain, but I also gleaned considerable knowledge about my disorder. Knowledge is the enemy of fear, after all. I learned about everything from the mechanics of the lymphatic system to developing surgical options and therapeutic techniques. I was filled with hope to see the hundreds of researchers, advocates, therapists, and physicians gathered together for the single purpose of battling lymphedema. I was asked to speak at the conclusion of a panel on pediatric lymphedema and was honored to share my personal experience with therapists and physicians alike.
LSAP not only offered a haven from the fear and doubt brought on by a chronic illness, but also inspired me to continue to advocate for other patients in any way that I can.
The international lymphedema conference was a wonderful event to attend;
Especially as a “1st timer,” because I had previously never been.
I was overjoyed, honored, and thankful, to be selected for the LSAP;
The Lymph Science Advocacy Program has so many benefits for me.
The 3 webinars I was required to attend before going to the conference in Washington D.C.
Were insightful, informative and gave me info on how to handle some things I would see.
A benefit of being a member of LSAP was the breakfast meeting that I had each day;
I could ask questions of that day’s presenter and hear what they had to say.
I was truly surprised at the abstract presenters and impressed by all the research they do;
I learned so much good and interesting information as they shared their findings with you.
By limiting the presenters to 15 minutes, a large assortment of topics were shared;
I was impressed how they spoke from the heart, it showed how much they cared.
I learned so much about lymphedema, particularly as it relates to self-care;
I would think to myself, “I didn’t know that... wow, I must be aware!”
It was interesting to hear about treatment interventions, even including delicate surgery;
I know more about nutritional influences and exercise is more important to me.
I liked talking to vendors in the exhibit hall and seeing what they had to share;
I learned about different products and devices that I wouldn’t have known about if I wasn’t there.
I was overwhelmed at the generosity of conference sponsors and all that they did for us;
The lunch, the dinner, the cruise, the entertainment, and even the nice comfortable bus.
It appears that the future of lymphatic treatment and research is brighter than I’ve ever seen;
And, I’ll always remember my wonderful experience of attending the NLN conference of 2014.
What a blessing and an honor it was to be selected as one of the LSAP participants at the NLN’s 11th Biennial International Conference. LSAP has enriched my passion for shining a brighter light on this overlooked medical condition. Being able to interact one-on-one with doctors, therapists, and scientific researchers from all over the globe whose specialties include lymphedema and lymphatic diseases was an opportunity of a lifetime!
Growing up, I spent countless hours in dance classes and competitions, even continuing my dancing career right out of high school as a choreographer. Always living with lower extremity swelling, I was not given a proper diagnosis of primary lymphedema until late 2010. I have since redirected my love for the spotlight and found a greater calling to be a spokeswoman for lymphedema and lymphatic diseases. I kicked off my 2014 year with a reigning title of Mrs. Windermere for the Mrs. Florida America Pageant! Doors of opportunity, including the chance to be a part of LSAP, have continued to open, allowing me to share my platform and personal journey of lymphedema across the US.
Now I am a 2014 LSAP graduate, an experience that continues to make a huge impact on my life and will always hold a special place in my heart. My plans for 2015 are to take lymphedema awareness to greater heights while instilling hope in patients and creating a powerful message for a larger, more recognized support group. I want to express an extreme amount of gratitude to everyone at the NLN, whose determination to increase the awareness of lymphedema continues to inspire millions!