News
Risk Reduction in the News – Response from the NLN Medical Advisory Committee
2012 Conference featured in Oncology Times
Clinical Trials - Patient Participation
NLN Position Papers: Risk Reduction, Risk Reduction Summary, Diagnosis and Treatment, Exercise, Training, Breast Cancer-Related Lymphedema, Supplement BC-Related LE
The National Lymphedema Network (NLN) created the LSAP program in 2000 to educate advocates in the basic science of lymphedema and related disorders during the bi-annual NLN Conference, in response to the needs identified by lymphedema patients, caregivers, and family members. Participants are selected from submitted applications and represent a diversity of backgrounds and interests, including primary and secondary lymphedema patients from related causes.
The goal of the Lymph Science Advocacy Program (LSAP) is to engage and motivate patients and caregivers to action by providing a comprehensive understanding of the basic science, treatment, and clinical research of the lymphatic system, primary and secondary lymphedema, and related disorders.
LSAP Alumni
Conference Reviews
The NLN welcomed seven lymphedema patient participants to the Lymph Science Advocacy Program (LSAP) at the 6th NLN International Conference in Sparks/Reno, Nevada in October. The participants included: Candace Bridgewater, Orange Park, FL; Carol Chastain, Folsom, CA; Rebecca Morris, Arlington, MA; Tom Parkinson, DDS, Lakewood, WA; Cathy McPherson, Toronto, ON Canada; Robert Weiss, Northridge, CA; and Joan White, Roswell, GA.
The aim of LSAP is to engage and motivate patient advocates through a facilitated program focusing on the scientific sessions. The participants completed a rigorous application process and represented a range of interests in lymphatic issues and diverse geographic regions. The program was facilitated by Elda Railey of the Research Advocacy Network (http://www.researchadvocacy.org). Dr. Kathleen Francis served as a physician mentor to the group.
Beginning with a pre-conference workshop, the participants learned about the medical research system, how therapies are developed and how participants in clinical trials are protected. Dr. Francis presented an outstanding session on the current state of lymphedema research. In preparation for the workshop, the participants studied an online course for improving communication with researchers offered by the Research Advocacy Network, and reviewed articles to better understand evidence-based medicine and the relevance to patient-driven issues. Patients participated in the Plenary sessions attended Instructional session and actively communicated with numerous of the Key Lymphologist from around the world, and clearly there was mutual admiration.
Through LSAP and in cooperation with the ongoing work of patient advocates nationwide, the NLN is striving to gain a stronger commitment from the lymphedema community to address related issues through basic and clinical research. Program graduates will educate patients, families and caregivers, and possess the knowledge and skills needed to increase understanding of the research process through education on a local and national level to improve patient care.
As one of five new Lymph Science Advocacy Program (LSAP) candidates and also a recent Breast Cancer Survivor with transitory lymphedema, I am extremely grateful to have attended the 2006 NLN onference in Nashville, titled "Lymphedema: The Search for Truth."
Prior to the Conference, we all partici pated in three online seminars to prepare for the scientific meeting. The seminars helped us gain better understanding of the research process and ollaborating irectly with the professionals during plenary and instructional sessions.
Being in the midst of over 675 international healthcare professionals along with aypersons like myself—all who work tirelessly on behalf of lymphedema ufferers—was n eye opening, educational and heartwarming experience. The collaborative effort of physicians, researchers, nurses, therapists, scientists, geneticists, advocates and exhibitors gives us hope of finding a cure for lymphedema or, at the very least, of gaining a better understanding of the lymph system and lymphatic disorders and what we can do about them. We listened to doctors and therapists share their research and findings, successes and frustrations, then answer questions about techniques and concerns. It occurred to me that in this age of gigabytes and microchips, there is still much to learn about the human ana tomy and its interconnecting functions. They showed us how imperative it is that we work with the governing medical bodies to get a more comprehensive teaching of lymphology added to the medical schools curriculum. What I think impressed all who attend ed was the degree of dedication by the LE therapists who also have to be massage therapists, nurses, teachfdisorders and to be, in the words of Prof. Neil Piller, "skeptical, but not cynical" in their search for the truth. Time is of the essence to bridge the intellectual and scientific gap in the medical profession regarding LE. We must continue to be encouraged that answers are being uncovered.
My fellow advocates challenged me with their tireless work. There was a willingness to grow and start new LE support groups; continue fighting the important legal battles to secure funding for LE treatments and materials; increase the sharing of ideas and breakthroughs on an international level; and commit to meeting the needs of parents who have children facing a lifetime of treatments from lymphatic disorders.
The entire Conference was motivating and brings forth new opportunities. As advocates, we are the conduit between those who suffer from and treat LE and the general public who may have never heard the term. It will require lots of effort, but the journey has begun. I know that it is already happening for me, through the Breast Cancer Awareness programs.
As the Conference came to a close, my brain felt like a giant swollen lymph node in need of gentle and complete decongestive therapy. However, through the advocacy program, there is an avenue through which the information can flow and spread out to the world.
My interest in the LSAP program stems from my 3 year old son who has LE in his right leg and arm, so as you can imagine I want and need to learn as much as possible about LE.
To sum up the conference in one word, overwhelming. It was such an amazing experience to network and join conversations with the professionals in attendance. My eyes were opened up to a world of knowledge about Lymphedema that I didn't know existed. I realized that there are actually people out there actively working to advance Lymph Science and LE.
A huge bouquet and congratulations to you all!
The conference consisted of research paper presentations and break out sessions, topic specific. Some of the research presentations were well over my head but even so, I still managed to take away with me bits of knowledge. The abundance of appealing topic break out sessions made it hard to narrow down the ones I would sign up for but I was happy with the presentations I attended. All of the speakers were amazing and to my pleasant surprise, approachable. They were interested in the questions asked and responded to them in as much detail as possible. Time was a factor throughout the conference but the organizing committee did a tremendous job keeping it moving.
Specific Canadian "round tables" and meet and greet sessions were an awesome opportunity for networking. Hearing the other Canadians speak about their trials and tribulations were a great way to see what has been done and what is being done in neighboring provinces. This networking has opened up a whole new opportunity to gain wisdom and knowledge with support, closer to home.
As an LSAP participant, it was go, go, go. There was little time to stop for a break and the days were very full. Being able to meet the other LSAP participants and discuss together the information we heard throughout the conference made the world of difference to have a better understanding and a look at the information through the eyes of someone else. It was a wonderful group to be a part of and each participant was special in what they could offer to the rest of the group.
My son is full of energy and people are drawn to him. The thing they notice after his bright smile is his compression garments. Their question is always, "oh, did he burn himself?"
My response is always, "no, he has a condition called Lymphedema." They get that look on their face that says they have no idea what I'm talking about, they try to pronounce it back to me, and then I've got them…I say, Lymphedema, it is a condition…You can bet that once I'm done with them, they will not forget what LE is.
Thank you Saskia and the NLN team. Thank you so much for this wonderful opportunity. I am forever grateful and I will be spreading the word about LE.
I was thrilled to receive an email in early July 2008, informing me that I had been selected as an LSAP participant! I have a ten-year-old daughter who has primary lymphedema in her right foot and lower leg, diagnosed at age four. Thankfully, she suffers from relatively mild swelling and disfigurement. However, we have struggled with various troubling complications over the past year and a half.
I had been acting as her tireless advocate during our navigation of the medical system. Various medical team members often told me that I was the lymphedema "expert." As I knew that I had very limited knowledge and understanding of lymphedema and the lymphatic system, I found this assertion very troubling indeed.
Unable to find satisfactory answers to our daughter' difficulties, I became interested in promoting lymphedema and lymphatic research in Canada. Attending the NLN conference was an important goal in order to educate myself about the current state of scientific knowledge.
From our first LSAP group meeting with Saskia on Wednesday (pre-conference day), until the conference wrapup morning on Sunday, I felt privileged to be participating in an event where everyone attending pre-conference day was passionate about lymphedema: its treatment, management, and scientific investigation and understanding. Certainly, I was even busier than I had anticipated. As a member of a select group of patient advocates, I felt a responsibility to learn as much as I could through full attendance at the early morning roundtable seminars, plenary sessions, and educational workshops.
I listened, wrote, and tried to absorb the constant stream of knowledge and information being presented. (I felt a new appreciation that I had at least completed high school math and science!) I can now rhyme off phrases such as "axilliary lymph node dissection," "measurement thresholds for sub-clinical identification," and "bioimpedance analysis" with confidence.
I was particularly excited by the imaging research. Perhaps I am biased towards the importance of imaging in understanding the physiology of LE and the lymphatic system (I am married to a radiologist), but I cannot forget the words of a well-meaning physician describing the following conundrum to me with respect to my daughter's case: "We cannot treat what we cannot see."
Although there was limited information pertaining to primary lymphedema in particular, I ained valuable understanding of the different modalities of research that contribute to the understanding of this disease. For example, prior to attending this conference, I had never once thought about how a data management study might be designed, or that patient attitudes and subjective findings about their condition could be quantified and analyzed, thus leading to scientific impact.
On Sunday "wrap-up" morning, I realized that for me, the stated objectives of the LSAP program had been absolutely met. I felt that as the "gatekeeper" to so much information, it would be morally wrong for me not to share this knowledge. As I told Saskia that morning, I now felt a profound impetus to act on my intentions of promoting awareness, change and research. Moreover, during the conference, I developed friendships with the other LSAP participants and I derived inspiration from their remarkable stories of strength, tenacity, and hope.
Post-conference, I am thrilled to have recently been elected to the Board of Directors of The Lymphovenous Association of Ontario. I will focus on promoting research with the help and direction of LAO Executive Director Anna Kennedy and the other board members.
Friends and family have asked me if I learned anything specific at the conference that could make a significant difference towards my daughter's treatment and management. My reply has been that I learned that we are doing everything right for now, but that I was buoyed by the evidence of the growing numbers within the scientific and treatment community who are advancing the state of knowledge and awareness
As a lymphedema patient advocate, I perceived the 2008 NLN conference to be an incredible eye-opener. From the presentations at the first plenary session to the concluding talks I gleaned invaluable insights into the latest research and development on the lymphedema front. Especially enlightening were the presentations with encouraging news about pre-surgery measurements.
All surgeons who perform axillary node dissections and sentinel node biopsies should be informed that comparing such measurements with those post-surgery may be an important factor in diagnosing lymphedema. If a clinic can afford it, the bioimpedance device is a superior measurement tool. Sessions on the psychosocial aspects of lymphedema were intriguing. Speakers on this subject discussed the value of a solution-based approach to patient adherence rather than a more controlling approach that discourages compliance.
At other plenary sessions I learned that pumps may benefit some patients, and that the Flexitouch system may help those at home who cannot perform self-MLD effectively. A Flexitouch representative treated me to a soothing and relaxing half-hour session.
At a workshop presentation by an M.D., I discovered a host of popular medications that can cause edema to varying degrees. The speaker recommended that doctors of patients with lymphedema consider alternatives to these drugs, if medically possible. A pharmacist then summarized studies of supplements for lymphedema patients, including horse-chestnut extract, selenium, Butcher's broom, and Pycnogenol. Butcher's broom was a promising herb with which I was previously unfamiliar. In a separate workshop a panel discussed the current NLN position papers (available from the NLN website). Air-travel tips for lymphedema patients included avoiding alcohol and coffee, drinking plenty of water, and stretching frequently. Also, we were advised, if possible, to seek newer airplanes with reduced cabin pressure to lessen the swelling risk. I also learned tips on how a patient can pass through airport security when he/she must bandage or wear a bandage alternative on airplanes. If the individual prefers not to bandage after passing security, the speaker suggested that he/she arrive at the airport early to allow time to be wanded, and to bring a laminated prescription script from the doctor. We LSAP participants regularly met with mentors to ask questions about the lectures. One early morning we were treated to a Lebed exercise program where we laughed, blew bubbles, and threw beach balls to upbeat music. We were having too much fun to notice that this also benefited our LE!
The exhibit booths overflowed with exciting products, including the latest in bandages, decorative garments, gauntlets, devices for massage and pumping, supplements, and more.Of course, a visit to the NLN booth was in order.
Upon returning home I met with local doctors and my lymphedema therapist who also attended the conference to formulate a plan to integrate the new developments into a patient awareness program. What an incredible honor to be among the attendees and serve as an advocate to my community. Thanks to the NLN for a most informative and engaging conference.
Here's a riddle: What do San Diego and lymphedema have in common?
Nothing, you say? Think again. The answer may surprise you: PASSION!
San Diego, sure. It's a lively, happening place. But – lymphedema?
The 2008 NLN Conference for Professionals in San Diego was five packed days of discovering the passion that fills every player in the lymphedema field: researchers chasing the next hopeful angle with the excitement of a surfer out after the perfect wave; doctors whose fists clench in empathy as they seek out answers for their patients with lymphedema; therapists proud of the hours they spend reducing not only the swelling but also the self-loathing of their lymphedema patients; product suppliers and designers who strain to hear the small, discouraged voices of lymphers unable to find the right fit, the right feel, the one clever and comfortable solution to their awkwardness and pain.
And right in the middle of all those passionate, empowered professionals were five awed lymphedema patients, this year's participants in the NLN's Lymph Science Advocacy Program. Together, we five were there to represent the whole range of our fellow lymphers. Primary and secondary. Young and old. Arms, legs, and everything in between.
We can certainly do that. We all share the pain and frustration of freaking out over the infection risk of a mosquito bite or a hangnail. We taste the humiliation of hiding from the glare of public exposure wearing stiff and stuffy compression garments. We know the discouragement of giving up and paying cash we can't afford for critical products and services our insurance repeatedly denies. That empathy and shared experience is the easy part.
What's harder is to find ways to communicate our shared experience. At the Conference I was overwhelmed with the passion of so many professionals from all over the world. I had no idea there were so many people who cared so much about us. But clearly, all the good that's flowing from their passion has been generated almost exclusively by them.
The input from lymphedema patients is just about zero. It's certainly not because these professionals aren't struggling to listen to us, but because we aren't talking to them. We haven't yet found a united voice that can match their passion and commitment. Instead, when the diagnosis of lymphedema hits, we each retire to our own small corner and lick our wounds in silence.
As an LSAP patient advocate, what I take from the Conference is the challenge of drawing my fellow-lymphers out of our mutual isolation and into this community of encouragement, hope, and empowerment. Working together, we can spark the ideas our researchers need to solve the twin puzzles of prevention and cure. We can help our doctors learn about this last frontier of biological science, the human lymph system. We can express our appreciation for the hard-earned skills and experience of our therapists, influence the direction and quality of new product development, and demand needed legislative changes.
San Diego, lymphedema: passion.
My journey to the 2008 NLN conference began in 2007 when I attended the patient conference sponsored by Lighthouse Lymphedema in Atlanta, GA. To that point, I had not personally known a single other person with lymphedema despite being an 18-year breast cancer survivor and a member of three breast cancer support groups in Sacramento.
I came away from the 2007 conference with a renewed interest in finding out even more about lymphedema, alternative treatments, and efforts to raise awareness and funding for research and treatment improvements. I joined the National Lymphedema Network, attended meetings that were hosting lymphedema speakers, and continued my online networking on sites dedicated to lymphedema. In the course of these activities I learned about the NLN Lymph Science Advocacy Program (LSAP) and applied for consideration to attend the 2008 NLN Int'l Conference in San Diego. I was thrilled to be selected as a 2008 LSAP participant.
My inclusion in LSAP far exceeded my expectations. The caliber of conference presenters was exceptional, each presenting the most recent research or thinking about lymphedema. The discussion was more scientific, medically oriented, and at a much higher level than I had experienced at the patient conference. As a consequence, I deepened my understanding of lymphedema in general, rather than focusing so specifically on my individual circumstances.
The exhibitors were numerous and exciting, demonstrating the level of innovation that is occurring in the field and showing the range of people interested in contributing to the management of lymphedema. It was truly exhilarating to see the variety of bandages and compression garments; donning tools and measuring devices; and clothing options that are improving the appearance of lymphedema garments. There was so much to see and learn and I came away with tremendous appreciation for what the entrepreneurial spirit is creating for those dealing with this condition.
The ability to attend sessions and to interact with the physical therapists who are dedicating their skills to the treatment of lymphedema patients was a rare privilege. From personal experience, I know what a difficult job lymphedema treatment is – it is time intensive and demanding, both physically and emotionally. Hearing the comments and questions of treatment professionals only reinforced my respect for the skill, the dedication, and the caring that is making such a difference for all of us.
The LSAP program is well organized, with preparatory sessions in advance of the conference, mentoring sessions during the conference with doctors and other lymphedema experts, and ongoing networking opportunities with other LSAP participants and alumni.
I appreciate that this was a rare experience that few lymphedema participants will ever experience and I am grateful for the opportunity.
It was a special privilege to attend the 20th anniversary of the establishment of the National Lymphedema Network (NLN) and to see Saskia Thiadens honored for her vision in beginning the NLN and her leadership in fostering its growth to the impressive organization that it is today. What a meaningful demonstration of how one individual CAN make a difference!
For me, LSAP is a journey, a journey that is just beginning
I scarcely know where to begin, but I will start by saying it would be wonderful if every patient and caregiver could have the LSAP experience! The warmth and compassion that exists within the lymphedema community is truly remarkable and, although it may sound cliché, there really is a sense of family. I wish every person with lymphedema could experience the camaraderie which has arisen from a disease which all too often leaves its sufferers feeling isolated.
Our LSAP experience began with three "webinars." All were excellent, but I was particularly excited to hear from Dr. Kathleen Francis about the latest research and breakthroughs. I have always had faith that significant advances would occur during Dylan's lifetime (Dylan is my child who has lymphedema), but this was the most insight I had been given into exactly what these breakthroughs will likely be. There is reason indeed to be hopeful for what the future holds for persons with lymphedema!
Upon arrival we had a meeting for LASP members with Saskia Thiadens, which gave me my first taste of how rewarding this experience would be. Despite my extensive advocacy work and communication with countless individuals by email, there is no support group in my area, and I have had very little in-person contact with other lymphedema patients. Those who have had the experience know how therapeutic it can be just to be in the physical presence of others with similar experiences.
The next day was the first day of the main conference and I was the key note speaker during the opening ceremony. I shared my experience of raising a child with lymphedema and how his being denied coverage for garments set me on my journey as an advocate. I also talked about obtaining a state mandate, getting the federal bill HR 4662 introduced, and finally, how everyone can and must work for passage of that bill. I am very appreciative of all the enthusiasm and support expressed to me during the conference, which continues by e-mail as I write this.
Our days were jam-packed, and although I was completely exhausted by the conclusion of the conference, I was also sad to see it come to an end. I cannot even begin to list within the confines of this article all that I learned. Since my connection is through my son's primary lymphedema, I was especially interested in presentations including genetics, pediatrics, and care giving. The work being done with nearinfrared fluorescence imaging was also of particular interest to me. The still photos and movies shown using the fluorescence imaging to assess lymphatic architecture, dynamic flow, and response of lymphatic function to MLD, were fascinating!
All of the presentations were informative and interesting, and I found great value in the countless conversations which spontaneously occurred amongst attendees between sessions. In some ways I found this informal information-sharing as helpful as the lectures themselves. I came home with gems of wisdom that I can utilize as a caregiver and patient advocate, and I also hope that in sharing my experiences I have, in turn, helped others.
My participation in this conference has no doubt helped to further my ability to not only be the best caregiver possible for my child, but to also be the best advocate I can to help better the lives of all those who suffer from lymphedema. I came home so filled with ideas and enthusiasm, and I wish there were more hours in the day to implement them all. But for the present time, my priority will remain devoting myself fully to working toward passage of the HR 4662 federal bill. After all, advances in diagnosis and treatment methods only matter when patients have access and coverage for these services. Please support this effort to ensure that lymphedema sufferers are no longer denied coverage for the medical treatment they need and deserve. To learn more, visit www.LymphedemaTreatmentAct.org.
To any reader who contemplates participating in a future conference as an LSAP member, I cannot emphasize enough how rewarding the experience will be. The conference was everything I had hoped for and more, and I am so grateful to have had the opportunity. As I said in the beginning, it is an experience I wish every patient and caregiver could have.
The NLN conference in Orlando was quite the experience for me. Thanks to Dr. Mei Fu for nominating me and to Saskia Thiadens for accepting me into the program. Meeting my fellow "LSAP'ers" and LSAP graduates and hearing their stories of how their newly acquired knowledge has made a real difference in their local lymphedema community was truly moving. Breakfasts with our mentors were great. I especially enjoyed Michael Bernas discussing the LLLT. He stated that one treatment can actually excite cancer cells into activity, while further treatments appear to calm them back into dormancy. I had never heard of this before and think we need to learn more about this. I also enjoyed speaking with professionals whom I had met at the American Lymphedema Framework Project (ALFP) stakeholders meeting in Chicago.
The NLN Conference lectures were fantastic. I especially enjoyed the Point/Counter Point session on LLLT and Risk eduction with Drs. Ridner and Cheville. Dr. Sheila Ridner said, "I don't care what studies show what; when I am in a room with 20 LE patients and 18 tell me they got their LE after an air flight, I am going to listen to that, period." Jodi Winicour's presentation on Axillary Web Syndrome was outstanding. I also really enjoyed the presentation on breast lymphedema (which I have), a condition which is entirely overlooked by our physicians.
Meeting the vendors was quite the experience. I had spoken on the phone and/or e-mailed so many of them, and it was really nice to meet them in person. I Love the breast swell spot and other samples I received. And the biggest fun was when a group of therapists asked if they could take my picture with my patterned LympheDIVAs sleeves on. They said they had many patients who just refused to wear their sleeves because they were so ugly. When they saw how fashionable I looked, they were sure they could convince their patients to wear LympheDIVAs!
All the information regarding pumps, bandaging, liposuction, and de-bulking, will help me in my work at Step Up, Speak Out, and in my talks before various lymphedema support groups and student nurses.
Again, thank you all for this wonderful opportunity!
The 2010 National Lymphedema Network Conference was such an amazing experience for me. I have lived with lymphedema in both arms since I was six months old. It has always been a major struggle finding valuable and reliable information that could help me. Having to live with this condition everyday does have its setbacks, but right when I arrived in Orlando and saw hundreds of people there for the same reason, I knew I couldn't be in a better place.
The conference widened my eyes to lots of new technologies and discoveries that are happening in the world of Lymphology. Everyday the conference was full of energy and non-stop information. It did get overwhelming at times, but in a good way. By the end of the day, I was always full of new information.
The conference consisted of plenary research sessions, breakout sessions, vendors and my favorite part, round table discussions. I wish I could have attended all the sessions, but I'm very happy for the ones I chose. The speakers were excellent and presented beautifully. The pediatrics class, taught by Mary Kathleen Kearse and Dr. Feldman, was my favorite. The presentation was very interesting and informative. I had no clue that genetics play such a big role with primary LE. I loved how open everyone was to questions and comments. The plenary sessions had great new research that was interesting to hear about. I didn't realize so much lab based research was being done in regards to the lymphatic system. It's reassuring to know that people are helping to find out more about the lymphatics and maybe one day treating lymphedema will be as easy as treating a common cold. Wouldn't that be nice!
It was a great pleasure to sit down with amazing doctors, therapists and surgeons to talk about their opinions and experiences working with LE. I am so appreciative that they took that time to spend every morning with the LSAP participants. The best part of my day was listening to the discussions, and asking the experts questions.
The conference was a wonderful place to meet new people who had common stories and backgrounds. The other patient advocates were amazing and I know that I will always have their support and friendship. I loved talking to them and hearing their LE story. It felt reassuring to me that I'm not going through this alone. There are actually others out there that are going through the same struggles and adventures everyday. These ladies have inspired me to be who I am and never give up. I know that I'm not only taking away valuable information from the conference, but also a group of new lifelong friends.
My goal is to teach the people in my community about lymphedema and the risk factors. I want to share new information about lymphedema with the pediatricians at area hospitals. No child should have to go through the misdiagnoses process like I did, and should not be without the proper help they need. I want to set up a local support group in my community for anyone with LE. I think it is very therapeutic to be around others who are sharing the same experiences.
I am getting in contact with my congressmen to get on board with HR 4662. I continue to spread the word about lymphedema every chance I can get.
Thank you, Saskia and the NLN, for letting me have this wonderful opportunity that I will never forget. The conference was beautiful and couldn't have been done any better. I am so grateful to have had this experience. I can't wait for more to come!
First I would like to express my gratitude to the NLN and Saskia Thiadens for allowing me to participate in such an eye-opening and educational experience. I came to the 9th annual National Lymphedema Network International Conference as a person with lymphedema in my right leg, as an Occupational Therapist, and more importantly, as a patient advocate. I joked with my hotel roommates that the conference left me feeling a bit 'tripolar.'
Like most of the other LSAP participants, I initially felt overwhelmed attending the conference (this being my first one), but extremely excited to be part of a gathering of such amazing people. From our first meeting with Saskia on Wednesday evening, to Bob Weiss's lecture on the LE Bill HR 4662 on Sunday, I was eagerly soaking up as much information as possible. As LSAP participants, we also met daily with designated mentors who were very gracious in sharing their insights with us, and readily answered all of the questions we asked.
On our first full day, our mentor was Dr. Nancy Hutchison. One of the topics discussed with the LSAP group was regarding lymphedema, allergies and inflammation. Dr. Hutchison stated that in her experience, some lymphedema patients present what she called an 'allergy' type constitution. They are more prone to localized immune responses in their LE limb and have a generalized redness that sometimes looks like cellulitis. I've noticed a similar phenomenon in my patients and in my own LE extremity. Later in this first full day, the plenary session by Jane Armer on the Assessment of Genetic Predisposition to Secondary Lymphedema as a Potential Tool in Education for Risk Reduction and Individualizing Cancer Treatment also caught my attention. I feel this study is a unique and much needed approach to identify which breast cancer patients are at a highest risk for developing lymphedema based on specific genetic mutations associated with LE.On our second full day, our mentor for the morning was Steve Norton. Steve stressed how important good manual lymphatic drainage is in the proper treatment of lymphedema. It was an interesting juxtaposition, as in the late-afternoon plenary sessions the day before; there were quite a few presentations on the use of pneumatic compression devices in treating LE. As a therapist myself, I tend to go back and forth on this issue. I know that the newer generations of pumps are not damaging like the older versions, but I still feel the pump can be over-used by patients, even when given proper training and education. Also, as a person with lymphedema, I think pumps can be very isolating. Although for some patients the pump can be a good tool, for me, it would make me feel less like an active participant in my self-care. One theme I was grateful to hear throughout the conference was that, despite having LE, a person must live his/her life and not the disease. I know first-hand how much time and energy goes into performing a good self-care program at home. Taking the most active role possible gives me a feeling of empowerment in treating my LE and living my life.
I would be remiss if I did not mention the exhibitors and the exhibit hall. I spent quite a bit of time going to each booth, talking to the many helpful vendors. I met some amazing people, quite a few of whom I realized live and work close to my hometown. It was great making these connections, knowing that I have a whole host of new resource people who are educated in lymphedema, and whom I can call upon if needed for myself or my patients. One product that stood out to me was a line of compression garments by an Italian manufacturer. I believe they are new to the United States. This product was exciting for me as a younger person with LE. They are beautifully designed with an eye towards fashion, with many color and fabric choices. I know I sound like a spokes person here, but for younger people with arm and lower extremity LE, it offers us a more fashionable alternative!
I also must mention how 'wowed' I was by the Plenary sessions regarding NearInfrared Fluorescence Imaging given by John Rasmussen, I-Chih Tan, and Erik Maus. The images presented of both normal and abnormal functioning lymphatic systems were amazing. Their accompanying findings and images of lymphatics crossing watersheds and developing through scars were also exciting. As a therapist and a lymphedema patient, being able to visualize the lymphatic system in this way, gives me another piece of the puzzle in terms of knowing what effect manual lymphatic drainage has on the system. At one point in their lecture, they showed a patient receiving the imaging tracer then receiving MLD. Watching the response of the lymphatic system to the therapists' hands was no less than incredible. So exciting!! Not to mention the possible far-reaching uses for this new imaging technique.
Overall, it was an honor to attend the conference and to be an LSAP participant. The caliber of conference presenters, organizers, and attendees was exceptional. The passion of the professionals for LE was clearly evident, and this gives me great hope for the future. I would also like to mention how wonderful it was to meet the other LSAP participants, past and present. I know that they will continue to be a great resource, as they are all quite amazing individuals.
Having lymphedema rots, but the lymphedema community rocks! Anyone with lymphedema knows that too often we have to nudge, cajole, wheedle, or insist our way to proper diagnosis, qualified treatment, and appropriate patient education. Working through the abundant misinformation that seems to hover about the topic of lymphedema has been incredibly frustrating. So, what a delightful discovery it was to meet so many researchers, educators, clinicians, vendors, and fellow LSAP participants who are in my corner.
Lymphedema is not sexy, as researcher Elise Radina reported, and lymphedema work does not seem so sexy, either. Researchers struggle for funding; physicians specializing in lymphology tell us the nature of the business is that they do not get rich; and therapists are spread thin and struggle to get reimbursed. Yet, here they were, proof positive that research is vibrant, and there is an avid appetite for developing, learning about, and implementing new diagnosis methods, surveillance programs, and treatment protocols. Meanwhile, garment and other lymphedema product makers sell their wares to a very small market, and yet they continue to invest in innovation to better meet patient needs.
As an LSAP participant, I met many lymphedema luminaries and was delighted to learn they were approachable, open to discussion, and ready to offer suggestions for my advocacy project. Researchers, educators and clinicians answered questions, and technology and garment makers listened attentively to wish lists I had gathered from fellow patients. Therapists attending the sessions shared opinions and perspectives on the conference presentations. No one was too busy to lend an ear and offer insights.
I left the conference humbled at the undertakings of fellow LSAP participants and incredibly gratified by the contributions of the lymphedema community I met in Dallas. Rock on, stars of lymphedema! I appreciate every one of you.
I entered the LSAP for the NLN Conference to gain perspective on what is known and not known in the science of lymphedema (LE). I was eager for that knowledge because I am a bilateral LE patient subsequent to breast cancer treatment in 1999. I make a big commitment to daily self-care (CDT), therefore I must know the latest science that supports my efforts. I also must know this science because I am an LE patient advocate working to persuade our legislators of the medical necessity behind CDT and the need to pass laws requiring insurance coverage.
The conference experience was incredibly rich, complex and rewarding for me. I was grateful for the LSAP webinars and preview of research abstracts. My learning was broad rather than deep because I am still building a matrix into which I can place the details to fully understand them.
In fact, my strongest impression is that the science of Lymphology is also still building its own matrix. I saw advancements in knowledge. I saw the need to demand funding for deeper inquiry into lymph science to learn how this important body system really works, how it fails, and why. Yet, I got glimpses into the diverse disciplines from which research is coming, and was heartened to see that productive conversations are taking place across the boundaries between disciplines.
I was touched by the dedication of bright research professionals, some young and some legendary, who are building a foundation of questions and insights for deeper research to be built upon. The reports gave me hope that these energetic researchers will create a body of work so compelling that the medical community will understand lymphedema and will help us lead lawmakers, insurers, and the public to support ways to help LE patients prevent, mitigate and manage their conditions.
When I attended the 2008 NLN Conference as a new LSAP member, the extent of research on lymphedema impressed me, including bioimpedance work and lymph node transplant surgery.
Upon returning home, I met with local oncology professionals to inform them of what I had learned. I then launched a website containing updated lymphedema information. I also wrote articles on the subject, including clothing options for patients.
The breadth of the 2010 NLN conference surpassed that of the previous one. Highlights included lymphedema genetics and the breakthrough PAL trial (Kathryn Schmitz) regarding exercise and lymphedema. I met Heather Ferguson, who spearheaded the Lymphedema Advocacy Group (LAG) to lobby congress to pass legislation requiring Medicare to pay for compression garments.
After this conference I joined the LAG Board, wrote blog posts and spoke to several groups about lymphedema developments. Local lymphedema therapists met with me to brainstorm ideas triggered by the conference, resulting in a talk we delivered at our regional hospital on obesity and lymphedema.
The 2012 NLN conference proved the best yet in variety and number of studies conducted. Speakers covered treatment modalities for many types of lymphedema. Talks on improved surgical options for lymphedema made me realize how far that field has advanced.
A few weeks ago I recapped the conference with my lymphedema therapist and in a blog post. I plan to update the medical community and the public on the impressive advances made in the field. I will use social media as another tool to spread the news. One of my blog posts led to participation in a talk radio show about lymphedema. I hope to be featured again on Lymphedema Mavens talk radio and continue lobbying Congress through the LAG.
I'm grateful for the opportunity to participate in NLN conferences as a LSAP graduate. It's an honor, a privilege and—most of all—a responsibility.
First of all, I would like to thank Saskia Thiadens and the National Lymphedema Network for the amazing opportunity to attend The NLN Conference in Dallas, Texas. The conference was not only informative, but the atmosphere was full of energy, love and bonding among the lymphedema community.
Before leaving for Dallas we were required to attend three intensive webinars sessions hosted by a therapist, a doctor, and LSAP alumni. These webinars prepared us for the days to come and what to expect while at the conference in Dallas. The webinars were only the beginning of this amazing experience. The conference began with a guest speaker who was very memorable and inspiring for me. Deborah Cordner Carson is a young woman with lymphedema who is also a champion athlete. She shared the inspirational story of her journey overcoming lymphedema.
At the conference Plenary Sessions, doctors presented papers on the latest lymphedema research. The topic which held the most interest for me was the latest research findings on surgery in lymphedema, since this is something that I personally experienced. Each morning during breakfast we had mentoring sessions with various doctors and therapists. These sessions were very good because this was the opportunity in which we were able to ask questions and discuss topics that were important to us. One of my favorite Instructional Sessions was Integrative Approaches to Lymphedema Management. This class taught about the body and how lymphedema responds to diet and certain foods. It also dealt with natural remedies that relax the body and help lymph flow. There were all kinds of dynamic classes taught by very skillful doctors and therapists from all around the world.
The highlight of the conference for me was personally meeting and talking with Professor Hildegard Wittlinger. It was an honor to hear her speak and to tell her story about the struggles and fights to help lymphedema patients. The connections made during this conference are priceless! Making lasting connections and friendships made up for the lack of sleep for four and a half days. Overall, it was a fast paced, tiring, overwhelming, worthwhile experience. It has helped me further my advocacy work and I am excited to see what is next.
My deepest appreciation goes out to Saskia Thiadens and the NLN board for allowing me to participate in the 7th Lymph Science Advocacy Program (LSAP) at the 10th NLN International Conference. The entire experience was an unforgettable one for me.
As a selected LSAP participant I (we) were primed for our full participation in the conference through three one-hour webinars. These webinars were a tremendous help, as they prepared us to participate fully during the conference. I especially appreciated the third webinar, Advocacy, as it helped me to understand the rigors of full participation and what to expect. The webinar also help me to understand the importance of taking good care of myself during the conference.
The four instructional sessions that I attended were very important to me. I was honored to meet many international researchers, physicians and therapists. I must say that my favorite session was "Integrative Approaches to Lymphedema Management". The instructors shared aroma therapy, nutrition, and meditation; in fact during the session we all fell asleep during the mediation portion.
I would like to thank our faculty mentors who met with us every morning before we attended the Plenary Sessions. Their sincerity and commitment to lymphedema patients was heartwarming.
I've lived with secondary breast cancer related lymphedema for 30 years. In 2011 I made the decision to become an advocate for lymphedema patients. I became involved with the Lymphedema Advocacy Group and participated in the Lymphedema Lobby Days in Washington, DC, advocating the Lymphedema Diagnosis and Treatment Cost Saving Act of 2011, HR 2499. The conference was a reunion of sorts, as I was reunited with several of my fellow "Lymphers" from the DC lobbying day, it was a joyful and loving experience. There is a special bond between those of us who suffer with lymphedema.
I look forward to the 2014 Conference in Washington, DC.
My first experience as a participant in the LSAP program (Nashville, 2006) was the catalyst for my involvement in the lymphedema community in Canada, promoting awareness and education for lymphedema. Since then I have been fortunate to participate in each NLN conference, continuing to grow my knowledge and expand my network.
I believe that this year's conference was the best yet. From the scientific program to the organizing details, the NLN conference was a top-notch event. The scientific committee did an excellent job of planning the agenda, choosing a balance of topics (including surgical options) that were topical, relevant, and delivered by credible experts in their field.
The LSAP program gave me the unique opportunity to prepare for the conference through pre-event webinars and teleconferences with other LSAP participants in the months leading up to the conference. My favourite LSAP component was the roundtable discussions before each morning's first session with appointed lymphedema mentors. It provided us with unique perspectives on controversial topics in the field of lymphedema.
All of this enabled me to better understand the research process and scientific evidence for advances in treatment. It broadened my knowledge of the challenges faced in access and reimbursement issues so that I now feel better equipped to continue our Canadian advocacy efforts.
It was inspiring and motivating to meet other patients who are also passionate about advocating for change in the lymphedema world. Meeting these wonderful people gave me hope that just a small group of passionate individuals can really make a difference.
I feel very proud and honoured to consider Saskia Thiadens a mentor and a friend, and to know that without her support and the unique LSAP program, the Canadian lymphedema community would not be at the stage it is today.
There were three things I did after attending the conference. They reflect the various levels of commitments I have towards my new role as a lymphedema advocate, as well as, information I found significant.
The first thing I did reflects a commitment to self. I started doing my daily exercises differently using those wonderful green, pulsating images of a healthy lymph system presented at the conference as my guide. I would incorporate these images into self-care treatment.
Secondly, with respect to individuals, I have been keeping a list of people I know who have lymphedema. I sent them a letter. Here is an excerpt:
"I don't want to pretend to have answers, but I learned [a lot] about products (pumps and garments). I also have some overviews of new treatments. If you want to educate yourself about [lymphedema] on-line, this site is very useful - www.nwlymphedemacenter.org. 'Lymphedema Mavens' is a great podcast. Check it out http://www.thecityfm.com/program.php?folder=mavens. Learn more about the Lymphedema Treatment Act http://lymphedematreatmentact.org."
Third, with respect to community education, I contacted people developing our cancer treatment center and shared conferences resources on "multidisciplinary lymphedema programs". These were points I emphasized:
My thanks to everyone who has made this conference possible. You are wonderful.
Living with Lymphedema, I am used to feeling marginalized, or somehow, an "outsider," either trying to mask my physical and psychological differences, or having to explain them, even to members of the medical community. It is frustrating that pain associated with this disease is nearly impossible to express in terms that anyone not personally experiencing it can comprehend. In order to be understood, lymphedema must be viewed as a syndrome that encompasses more than just swelling. It affects us physically in countless ways, and hugely impacts our emotional, mental, and spiritual selves. It colors our outlook on the world and our conceptions of ourselves.
Thus, I was particularly interested in attending the conference to gain insight into how lymphedema is publicly discussed and perceived. The tone of the conference was set by the keynote speaker, an elite-level athletic competitor who lives with the challenges of lymphedema. Her story resonated with my own experience, and her attitude and accomplishments were truly inspirational.
Throughout the conference, I was impressed with the insights and empathy of presenters. It was encouraging to hear accurate messages about the patient experience. The imposing quality of life issue is often completely minimalized and overlooked because lymphedema is considered non-life-threatening. However, the threat is there; a life lived under the shadow of lymphatic dysfunction is compromised every day that the patient feels alone and unheard. "We Are Here" and we need a voice. I felt that this year's conference helped facilitate that dialogue. I hope that the voices will continue to unite into a force for positive steps toward a cure and improved treatment methods, as well as the essential understanding of lymphedema as a whole-person disease, not just swelling.
Following breast cancer I was diagnosed with upper extremity lymphedema on my dominant side. I did not know anything about lymphedema except it caused swelling. As an educator I am one to find out as much as possible about a subject of interest to me. Lymphedema became a subject of interest! I joined an online support group. Several on that site had attended the NLN LSAP program and encouraged me to apply. I also helped start a local support group in my area. The more I learned about lymphedema the more I wanted to become an advocate—especially locally. So I was quite honored to be one chosen to attend the 2012 NLN LSAP program.
It was amazing to be around so many people who know what is going on and/or are involved in research and treatment of lymphedema. The surgical techniques being trialed to help alleviate this condition are encouraging. Lymphatic imaging may bring new insights into the way the lymphatic system works and give us better insight into manual lymph drainage. Earlier detection is being promoted to keep lymphedema from progressing into more advanced stages. More precise measurements for detection of lymphedema are being developed. I learned so much about these topics.
The exhibit hall was amazing. There were so many products for all types of lymphedema. I could have spent more time in that area.
Meeting the other LSAP patients was wonderful. I was inspired by the different areas of advocacy each one is involved in. I enjoyed the breakfast every morning with the group and the experts who gave us their time to answer our questions.
I now have friends to communicate with to help me in my advocacy for lymphedema. They have given me many ideas. Thank you Saskia for the opportunity you gave me to become more knowledgeable in what is being done for this chronic condition.
For the first time in my life, at the NLN Conference 2012, I was surrounded by a wealth of knowledge and focus on the condition I was born with. During the first session Wednesday morning, Jenny Bradt and Michael Bernas presented a broad look at primary lymphedema, including Klippel-Trenaunay, the syndrome I have. After decades of feeling like I was in the Sahara, searching for treatment, often being the only lymphedema patient doctors had seen, and being told repeatedly there was no treatment, here I was absorbing detailed case studies and treatment options from professionals clearly excited by their work. It was a bubbling spring to this desert traveler.
A major goal I had for my community was to learn how to fill the need for lymphedema physicians. At the LSAP breakfast talks and lunch discussions, I gained a more rounded picture of the challenges and opportunities involved. Furthermore, I received specific contacts and encouragement to start the process.
Other ways I could make a difference emerged as well. I learned how other LSAP participants are running support groups, working on legislation, writing guidelines, and promoting awareness in their communities. Hearing Sheila Ridner talk about the need for national promotion inspired me to bring my background in advertising to bear on this problem. And after the Lymphatic Disorder Phenotypes talk, I offered my participation to help the study. And after witnessing therapists and vendors learning and sharing, I also realized the need for a local communication vehicle to keep these connections going.
Finally, the unexpected takeaway was that, like other conditions that have made big progress in treatment, like cancer and diabetes, the key agents for change in lymphedema will likely be patients - patients like me who found a bubbling spring and want to share it with fellow travelers.
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