Class of 2012
2012 Conference LSAP Review
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:
- Over-arching principle of cancer rehabilitation - "early intervention to reverse some of the aspects of frailty may delay the onset of disability." As noted in conference research, most cancer patients do not hear about lymphedema (LE) as a possible complication from their doctors. LE programs address this issue with a continuum of care using Dietz's classification of stages of cancer rehabilitation.
- A team approach is crucial. This includes an understanding of the concepts "multidisciplinary", "interdisciplinary", and "transdisciplinary."
- A critical role in this team approach is that of the "physical medicine and rehabilitation, MD"
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.