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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
by Saskia R. J. Thiadens, RN
My first encounter with the relatively unknown syndrome, “lymphedema,” was in 1985.
I ran Aurora Manor, a post-operative care facility opened in 1980 in San Francisco, where I saw a patient with an extremely enlarged swollen arm. She had undergone breast reconstruction after a mastectomy and it appeared that she had an allergic reaction from the intravenous.
As a Registered Nurse/Caregiver, I immediately called her surgeon and expressed my concern. He laughed and told me she had the swelling in her arm for nine years, and there was nothing that could be done to improve it. I was puzzled—and inquisitive—as to the underlying cause/s and possible treatment. I reached out to local colleagues; they each told me that it was lymphedema as a result of her breast cancer surgery, and no effective treatment was available.
Shortly thereafter, I opened the first lymphedema clinic in the United States (Aurora Lymphedema Clinic, 1987), and quickly became aware of the enormity of lymphedema and its unknowns. The phone did not stop; both young and old with swollen arms/legs were calling the clinic, hoping that I could help them.
I soon came to the realization that this was much bigger than I anticipated, and that there was a desperate need for awareness, education, and most importantly, an effective treatment for lymphedema. Toward that end, in 1988, I founded the National Lymphedema Network (NLN ®), a tax-exempt, non-profit organization, now comprised of healthcare providers, researchers, lymphedema patients and patient advocates—all dedicated to making authorative information on lymphedema available to the medical profession, lymphedema patients and the general public. The NLN subsequently adopted a “Mission Statement” to establish the NLN’s goals:
The Mission of the NLN is to create awareness of lymphedema through education and to promote and support the availability of quality medical treatment for all individuals at risk for or affected by lymphedema.
Additionally, the NLN is dedicated to:
It was important for me to expand my knowledge of this disabling condition as quickly as possible in order to give relief to the ever-increasing numbers of patients presenting themselves daily at the clinic. I searched throughout the country for—and attended—various conferences on breast cancer. I was anxious to meet professionals with knowledge and/or interest in the lymphatic system. I found that there were no doctors and no other healthcare professionals able to either diagnose, treat, or refer patients with lymphedema.
My journey began with only a few patients, but soon I found myself advocating for the thousands of people suffering with this ignored disease. Now 20 years later, the NLN has joined forces with the oncological community, as well as other disciplines. Lymphedema now is identified as a legitimate disease in the United States. The most current standard treatment, Complete Decongestive Therapy (CDT), is in place at university-based clinics, hospitals, rehabilitation centers and free standing facilities; thousands of clinicians have become Certified Lymphedema Therapists; physicians have included the lymphatic system in their existing practice; research is in progress in academic institutions; and patients are actively advocating for their rights and convincing their state and federal representatives to get laws in place to support proper treatment and reimbursement.
Our ultimate goal is to assure that all patients with lymphatic disorders will receive the care they deserve.
A CHRONOLOGICAL HISTORY OF THE NATIONAL LYMPHEDEMA NETWORK—CAPTURED THROUGH HIGHLIGHTS OF 20 YEARS OF DEDICATION TO LYMPHEDEMA EDUCATION AND AWARENESS
January 1989 ~ The NLN established membership in this non-profit organization to better disseminate information about lymphedema. Without a lapse in time, numerous massage therapists, a physical therapist, a physician (Dr. Joseph Feldman), and many of the Aurora Lymphedema Clinic patients joined. Concurrently, the NLN Newsletter was published—an informative periodical consisting of four lymphedema fact-filled pages, subsequently mailed to cancer centers across the U.S., along with distribution to the attendees at the various breast-cancer conferences in which I attended.
Shortly thereafter, a Board of Directors was formed—an enthusiastic group of business people consisting of an accountant, a lawyer, surgical and medical oncologist, and an Aurora patient, all thrilled to lend their interest and support to this young, fast-paced, quickly expanding medical entity.
Nevertheless, with the minimal interest in this mostly unknown malady and continuing resistance in the U.S., I chose to reach out abroad for the much-needed knowledge and support. I learned about the International Society of Lymphology (ISL), and their XVII Congress which was to be held in Tokyo that year. I was able to attend this interesting, eye-opening conference and found that there was great interest in the basic science of the lymphatic system which, in turn offered hope for the future of patients with lymphatic disorders. Also, this is where I was fortunate to meet some of my life-long friends and colleagues.
1990-1991 ~ I formed the first NLN Lymphedema Support Group in San Francisco and was overwhelmed by the number of patients and family members hungry for information and help. We began holding active monthly group meetings with an array of renowned speakers such as Prof. Waldemar Olszewski, Drs. Marlys & Charles Witte, and Dr. Leo Neuborg, a vascular surgeon from Holland and an expert in the surgical intervention of lymphedema.
At the same time, numerous professionals from around the country contacted me, expressing interest in joining the NLN as a support/treatment facility. Eighteen lymphedema treatment support programs were established nationwide and subsequently listed in a new NLN Newsletter classification, “Resource Guide,” and our membership grew.
1992 ~ With an award from Ernst & Young honoring me with the designation, The Northern California Entrepreneur in recognition of the NLN, the organization was provided with wonderful media exposure; donations and membership to the NLN increased while hundreds of patients and family members contacted the NLN office.
Prevention, an international consumer magazine, published its first article on lymphedemainwhich they called it the "ballooning limb" syndrome. This was our first national/international outreach and we immediately were bombarded with phone calls from people around the world requesting further information about lymphedema and the NLN organization.
Outreach/educational efforts expanded, membership continued to grow, and our quarterly publication increased to eight pages.
1993 ~ I represented the committee at the ISL Conference in Washington, DC, bringing 40 pioneering patients from around the country to this scientific congress—an action unheard of at that time. These patients provided a reality check of actual complex cases which they presented during a specially organized patient clinic. Patient clinics now have become standard during scientific lymphology conferences.
1994: A Milestone ~ The First National Lymphedema Network International Conference on Lymphedema took place in San Francisco, drawing an amazing 300+ healthcare professionals and patients from around the world. The NLN began global networking— acting as a central information center for the U.S. lymphedema community.
Articles about lymphedema and the NLN were being published frequently in regional and national newspapers, medical journals and periodicals, papers on health, etc.
NLN Newsletter expands to 12 pages.
March 6, 1994 ~ The NLN founded Lymphedema D-day, a special day set aside each year to honor inspirational patients: those who have contributed to the community or who have shown great courage in their struggle with disease. Since our first D-day celebration, hundreds of patients and healthcare professionals throughout the country have been honored. Those results receive both local and national media exposure, making the world aware that lymphedema is no longer a rare condition.
1995 ~ F irst NLN educational workshops on the West Coast coordinating a Vodder Training Course, How to Set up a TreatmentCenter, and Bandaging and Measuring.
NLN participates and exhibits at national oncology conferences, reaching out to oncological disciplines throughout the country; joins breast cancer rallies with excellent networking results
The lymphedema professional community began to break into camps due to lack of standards/guidelines for "appropriate" treatment and training of professionals—unfortunate politics that adversely affect lymphedema patients. This chaotic climate continued until 1998 and the NLN was in the midst of it until the need for unity among the various training courses was realized. Eventually in 1998, all instructors of schools and other key players met and, together, founded the Lymphology Association of North America (LANA). This non-profit organization sets the standards for lymphedema therapists—administering national certification examinations to test knowledge considered fundamental in the treatment of lymphedema. Today, 869 therapists are certified by LANA which we hope will, in time, support difficult reimbursement issues and attract more therapists to the field of lymphology.
1996 ~ Second Biennial NLN International Conference on Lymphedema, held in San Francisco. 400 healthcare professionals and patients from sixteen countries participated in addition to many industry-related companies.
Continued skepticism in the medical community—The NLN increases efforts to educate patients, especially at a grass-roots level.
Patients began to become aware of effective treatment and many of them, angry and frustrated, became the first American lymphedema activists. Local grassroots efforts to effect change in the medical community started in countrywide neighborhoods with the NLN as the central clearinghouse.
The NLN established an ONLINE WEBSITE, www.lymphnet.org and received overwhelming response from patients and professionals internationally.
1997 ~ The NLN participated in breast cancer legislation circulating petitions nationwide. With the efforts of Dr. Ernie Bodai, a local breast surgical oncologist representing the NLN, a landmark rider was added to both a California State and a Federal bill, each of which provided insurance coverage for treatment of patients who developed lymphedema post-breast cancer surgery.
A new and expanded Board of Directors was formed along with a Medical Advisory Committee (MAC) and an International Advisory Committee.
NLN membership and sponsorship reached over 2500, while the staff increased to two full-time employees; the NLN became involved in the planning of major projects funded through the submission of grant applications to various sources; and lymphedema finally started to receive some media coverage (brief spots in television news and morning programs).
The Lymphedema Alert Bracelets debuted. Designed by Karin Douglas, a breast cancer and lymphedema activist, the bracelets were produced as a fundraiser for the NLN. Presently, the NLN sells over 3,000 bracelets per month to patients with lymphedema and patients at-risk for lymphedema; they have been a huge educational tool among both patients and professionals and are seen in hospitals and doctors’ offices.
1998 ~ The NLN’s 10-YEAR ANNIVERSARY
The Third NLN International Conference, "Lymphedema: Uncovering The Hidden Epidemic," was held in San Francisco, CA, with over 500 physicians, nurses, physical and occupational therapists, massage therapists and patients attending.
The NLN joined with the American Cancer Society (ACS) in a two-day workshop in New York. This notable collaboration featured invited speakers Profs. Michael and Ethel Földi, Judith Casley-Smith, M.D., Robert Lerner, M.D., Albert LeDuc, M.D., Jean Petrek, M.D. (deceased), and numerous American physicians and therapists. Proceeds were published in the Cancer Journal.
The NLN Newsletter ran as a 24-page quarterly.
1999 ~ NLN Organizational Development Plan implemented.
Additional plans for 1999 included technological upgrades to improve information/database management, outreach and self-sufficiency. Initial planning of NLN chapters began.
The NLN was accepted as a recipient of donations from the Local Independent Charities and United Way Fundraising Campaigns (1999-2000), and continues to receive matching contributions each month.
The NLN actively participated in the formation of Lymphology Association of North America (LANA).
National media exposure increased; NLN Newsletter grew to 28 pages.
2000 ~ The NLN presented its 4th International Conference in Orlando, Florida.
650+ attended, including 200 patients from around the country of whom some presented their own case history during the popular Patient Clinic.
A nationwide NLN Insurance Coverage Task Force was organized, consisting of patient activists and healthcare professionals working together on a national level, as well as independently in their local communities, to promote and secure insurance coverage for lymphedema treatment. A formal request was submitted to Medicare for a national coverage decision on Complete Decongestive Therapy (CDT) for the treatment of lymphedema, under the Rehabilitation benefit.
The NLN Newsletter, renamed NLN LymphLink, was redesigned by NLN’s graphic designer, Marcia Kruse ( Southern California). The new publication boasted 32 pages of exceptional articles directly related to lymphedema, a major list of resources (later to become an 8-page, easily removable centerfold), and a News & Notes section to stay abreast of current activities.
2001 ~ The NLN launched a nationwide campaign to promote submission and passage
of Statewide resolutions designating March 6 as Lymphedema Awareness
D-Day, with the goal of a national resolution instituted by March 6, 2001. Virginia was the first state to adopt the Resolution; in the years since, 32 states have followed.
2002, 2004 & 2006 ~ The NLN International Conference continued to be held biennially, in Chicago, Illinois; Reno, Nevada; and Nashville, Tennessee, respectively. Clearly, the field of lymphology is growing, and more basic, clinical and genetic research continues at academic institutions worldwide. In 2005, the landmark Patient Summit was organized; over 200 patients from nearly every state attended. It was a historic event and we hope to repeat it in the future.
The 8th Biennial NLN International Conference was held on August 27-31, 2008, in San Diego, California. Topic: Lymphedema: Riding the Wave to Discovery.
Also, in 2008, the NLN LymphLink officially became 36 pages to compensate for the enormity of information to be disseminated to the lymphedema community.
The 9th Biennial NLN International Conference will be held in Orlando, FLorida, September 22nd through 26th. Topic: Lymphedema: Breaking through the Barriers: Research, Education and Practice.
AN OVERVIEW OF THE NATIONAL LYMPHEDEMA NETWORK
PROGRAMS, PUBLICATIONS AND PERSONAGE
OFFICIAL PUBLICATION:
The NLN Lymphlink, official NLN Newsletter is now in its 20 th year of publication (Volume 20, No. 2 in production). The journal has 36 pages and is distributed to members, i.e.: patients, professionals, support groups, universities, doctors’ offices, libraries and others. Each issue covers a specific topic related to lymphedema and includes case studies, question corner, research perspectives, action corner, book review, legislative corner, in addition to a Resource Guide with a listing of training courses, support groups, affiliated clinics, therapists and suppliers. An extensive educational corner allows members to purchase textbooks, patient educational material, CDs and videos, along with specialty items such as bracelets, necklaces, baubles and the popular wristband imprinted “We are Here.”
BOARD AND COMMITTEES:
The NLN has an active Board of Directors who meet four times each year and oversee the fiscal and organizational aspect of this non-profit organization.
We are fortunate to have a Medical Advisory Committee (MAC) with an experienced, active and dedicated committee consisting of four physicians, four nurses, two physical therapists and instructors of training courses. Four meetings a year are scheduled, however additional meetings are scheduled as needed. The MAC oversees all medical related issues, writes policies including the NLN Position Papers, and is well respected in the medical community nationwide. NLN Position Papers are used widely in breast centers, hospitals, doctors’ offices, lymphedema clinics and support groups. MAC members are often called upon to lecture at various local, state and national meetings. MAC members also actively participate on the Scientific NLN Conference Committees.
The Research Committee consists of two P.T.s, three M.D.s, one R.N., one Ph.D., and two R.N./Ph.D.s—all with a strong interest and extensive experience in clinical research. Some have received NIH grants through their academic institutions and actively do clinical research related to lymphedema. In 2001, the committee designed an online patient survey, focusing on questions regarding causes, education, infections, incidence, and quality-of-life issues. The subsequent data has been presented at both national and international conferences. At the present time, the committee is reviewing the possibility of organizing a two-day workshop for interested clinicians, “How To Write A Fundable Grant.” A needs-assessment survey in on NLN website www.lymphnet.org. The Research Committee also screens funded lymphedema studies to be posted on the NLN website.
LEGISLATION:
The Legislation and Insurance Committee is headed by a strong lymphedema legislative patient advocate, Robert “Bob” Weiss, MS, who has been active in improving state and federal legislation relating to lymphedema. Faced in the political arena with ongoing insurance and legislation struggles in the U.S., our legislative activists/advocates, working with an American Cancer Society lymphedema work group, have succeeded in enacting a lymphedema treatment law in Virginia in 2004, achieving favorable action on lymphedema insurance issues, and presently are working to establish a lymphedema and lymphatic disease research grants program and a comprehensive lymphedema treatment and patient protection law in New York state. We are supporting activist groups in CA, NY, MA, GA and CT to enact lymphedema legislation, and have been seeking Congressional sponsors for a comprehensive lymphedema diagnosis and treatment cost saving bill for Medicare. Weiss and the Committee have helped dozens of individual patients to obtain insurance reimbursement for treatment and garments.
TRAINING PROGRAMS:
The Lymph Science Advocacy Program (LSAP) is a training program for Advocates for Research and Education about lymphedema. The goal of LSAP is to engage and motivate patient advocates and caregivers to action in issues of treatment and research of the lymphatic system through education and a more comprehensive understanding of the scientific and clinical research aspects of lymphedema and related disorders. First launched at the 2002 NLN Conference, five lymphedema patient advocates actively participated in the scientific meeting. In order to qualify, patients must submit an application and identify their active involvement in advocacy and scientific interest. Presently, there are 16 LSAP graduates; patients are now applying for the 2008 NLN Conference.
Parents Lymphedema Action Network (PLAN) was developed as an information source for parents of children with lymphedema—specifically to answer questions from desperate young parents who are unable to get answers from their pediatricians. Additionally, PLAN was set up as a support source, using the newly created “online message board” (NLN website) to share concerns and communicate with other young mothers and fathers who need help facing this frightening disease. PLAN’s primary resolve is to improve the life of newborns and children with and at risk for lymphedema.
GRANTS AND FINANCIAL SUPPORT:
As a tax-exempt organization, the NLN relies on donations and educational grants from members, industry and friends of the NLN, in addition to conference and organizational grants from the Center of Disease Control (CDC) and the National Institute of Health (NIH), Susan G. Komen Breast Cancer Foundation and the American Cancer Society. Each year, the NLN provides members with an “End-of-the-Year” letter, describing our accomplishments during the year and goals for the year ahead. In return, members make substantial contributions to support and thank the NLN—allowing us to continue the many NLN projects.
The Garment Fund is a new fund established in the name of Marilyn Westbrook whose family recently made a large contribution to the NLN. It was Mrs. Westbrook’s wish that no other patient would have to endure what she experienced six months prior to her death in December 2007. The Marilyn Westbrook Garment Fund will enable patients who do not have insurance or the financial means to purchase much-needed lymphedema compression garments and alternative products.
Recently, the NLN partnered with the National Accreditation Program for Breast Centers (NAPBC), a new organization which provides standards to hundreds of Breast Centers in the U.S. The NLN offers guidance with lymphedema awareness and education, including NLN Position Papers, and allows many professionals to become informed about pre- and post-operative guidelines, also collecting required data from hundreds of breast centers that have applied for the accreditation program.
STAFF AND VOLUNTEERS:
The NLN has five full-time staff: Executive Director, Assistant Director, Database/Website Manager, Outreach Coordinator and Bookkeeper. The NLN also has several volunteers/patients who help with mailings, data entry and answering phones. The website receives an average of 360,000+ hits on the internet per month, plus hundreds of emails and phone calls asking medical and organizational questions. Two hours are set aside each day to respond to the patients’ medical questions.
We have come so very far this past 20 years…our biggest accomplishment being that many lymphedema patients now are receiving standard treatment and much-needed education.
Our primary goal in this next decade is to create awareness and interest among all disciplines and make the lymphatic system part of all medical practices. We look forward to the continued growth of the NLN to achieve the ultimate common purpose of our worldwide relationships—a universal treatment and cure.
SASKIA R.J. THIADENS, R.N.
Executive Director
National Lymphedema Network
saskiat@lymphnet.org
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