By: Bonnie Pike
Patient Advocate, Phoenix, AZ
As the moderator of the LSAP Forum I am thrilled to cover our very first article. The NLN LSAP Program was established in 2000 to educate LE advocates in the basic science of LE and related disorders during the bi-annual NLN Professional conferences. Patients are selected from submitted applications and represent a diversity of backgrounds and interests. Since 2000 we have 28 LSAP graduates; you can view their individual stories and conference perspectives here:
Patients have a role in the lymphedema community that no one else can fill. In fact, we’re the very heart of everything that goes on: the hustle of research discoveries, new surgical procedures and forward-looking product development.
Still, much of the time we feel invisible, deprived of timely diagnosis, comprehensive treatment, reasonable insurance coverage, standard protections like knowledgeable doctors and fully-qualified therapists—even of something as simple as public awareness and acknowledgement of our reality.
So, what can we patients do?
One option is to give in to the hopelessness and frustration, quit work, exercise and social events, and retreat from the world of stares and questions. Plenty of us have taken that route.
Or, as more and more of us are discovering, we can identify a need and then help find the solution to it ourselves. Among the graduates of the NLN’s Lymph Science Advocacy Program (a course of study for patients that leads to participation at the biennial NLN conference for professionals) and among lymphedema patients world-wide, there are men and women (and even some amazing teens!) who are using their own skills and interests to work toward solutions.
What can patients do? The answers are full of passion and creative energy, and as varied as the patients themselves. Here are some examples of real-life patient projects.
Becky helped establish a lymphedema support group where she lives in Appalachia. Not only patients and caregivers, but even nurses and therapists are full participants. In response to the needs they’ve uncovered in their group, they are also working toward establishing a foundation to provide compression garments for patients who can’t afford them.
Patrick pioneered direct patient access to research relating to lymphedema by organizing and posting evidence-based information online, then up-dating it constantly as new discoveries are made. He continues to host countless online discussion groups that cater to lymph-ers of every stripe—primary and secondary, children and teens, women dealing with lipodema, and an active group specifically for men.
Martine lives in Finland and works tirelessly to reach isolated lymphedema patients with the information and skills they need to manage their condition. She maintains productive contacts with the media and with medical professionals, manages a patient support group, and researches lymph science and lymphedema management practices world-wide—all while watch-dogging the activities of uninformed medical leaders in her own country.
Jane used her considerable computer and design skills to build an evidence-based information website for women and men with breast cancer-related lymphedema. She updates it regularly, manages a full range of social media related to it, and stays in touch with researchers, clinicians and product suppliers, both to keep abreast of developments in the field and to communicate patient needs to them directly.
CJay co-hosts a lively online radio podcast originating in Las Vegas that features timely interviews with people involved in all aspects of lymphedema, both patients and professionals. Her program brings the condition into the public eye while offering inspiration and direction to fellow patients. She is also active in promoting the Lymphedema Treatment Act.
Anna works in Canada with the Canadian Lymphedema Framework Project to standardize lymphedema training for professionals and make sure lymphedema is on the curriculum of their medical schools. She leads the Lymphedema Association of Ontario to support and educate patients in her province, setting a precedent for the whole of Canada to emulate.
Carol saw a need to educate nurses about everything from risk-reduction to diagnosis, treatment and self-care. Since her career involves developing and teaching continuing education, she used her skills to research and write an educational course for nursing professionals. It is now included in one major insurance carrier’s case-management nurse-education program, and Carol is seeking the resources to offer full continuing education credit for other nurses who complete the course.
Dozens of other patients offer services of all kinds to the broader lymphedema community. Some provide in-service training of healthcare workers, cooperate with lymphedema researchers to find and encourage study subjects, cruise online discussion groups to locate and direct undiagnosed patients toward proper evaluation and follow-up, challenge lymphedema misinformation in print publications and online, and stay abreast of developments in lymphology to pass on information about new research both to fellow patients and to other researchers. One group of underserved lymph-ers produced a moving ethnodrama, available both online and in live presentations, that illuminates the patient experience in a way that is difficult to ignore.
Countless others confidently educate their own healthcare providers, friends and the public about lymphedema whenever the opportunity arises. And still others, medical professionals themselves, turn their personal knowledge of this condition into informed and heartfelt work as clinicians, researchers and medical educators.
What do we need in order to advocate for ourselves and others, instead of hiding out in shame?
One important contribution is support from family, friends and fellow lymph-ers, but also from our therapists, fitters and medical professionals who have armed themselves with information, training and a listening ear.
Equally important is information we can freely access and understand. That includes everything from materials written from the patient perspective addressing our felt needs, to the science of the lymph system and the latest news from the research community. We need the help of authoritative sources to challenge the misinformation produced by our own medical providers, the media, and rogue websites seeking to capitalize on our vulnerability. We especially value the opportunity as LSAP students to attend the NLN conferences, where we’re exposed to the whole range of resources gathered there. Recently, we LSAP grads have joined together in an online group to share our skills, resources and encouragement.
Whether you’re a medical professional, a researcher, a product supplier or a fellow patient, we look forward to partnering with you for mutual encouragement and problem-solving. Together, we can make a difference in lymphedema care.