By: Joan White
LSAP LLN Director
Joan White, a former NLN Board Member, was one of the first graduates of LSAP in 2004. With over 20 years of experience advocating on behalf of lymphedema patients, Joan is a wonderful example of how patients take charge and become advocates themselves. Today, Joan is the founder and director of the Lighthouse Lymphedema Network, an organization helping lymphedema patients within the state of Georgia. The NLN encourages our readers in Georgia to visit their website, www.lymphedemalighthouse.org, to read more about the services and resources they have to offer. We hope you find Joan’s journey from patient to advocate inspiring and, if you are a patient, you consider applying for the 2016 LSAP program.
When I was diagnosed with lymphedema in 1988, I had never heard the word and assumed this was something that would eventually go away. But lymphedema does not go away—and because the word “lymphedema” was not in our insurance policy, there was no coverage provided/
I made calls to the NIH and several cancer centers across the country. I eventually learned about the Foldi Clinic in Germany and the Lerner Lymphedema Clinic in Princeton, NJ. The whole experience only made me focus on getting the best treatment for other patients like me.
In 1993, around my kitchen table, three lymphedema patients, one massage therapist, one occupational therapist, and my husband gathered to begin what would become the Lighthouse Lymphedema Network (LLN). We set small goals and then bigger goals, but never imagined the organization that we are today.
In our 21st year, we reached a long-awaited milestone of sponsoring a Physician Intensive Educational Program on February 27, 2014. 21 physicians completed this free course, and it was an amazing evening of interaction between physicians and speakers.
The LLN participates in various health and wellness fairs, sponsors fund raisers, publishes a quarterly newsletter, has written two books, and maintains a website. The income from the sale of the books helps us fund our Bandages and Garment Fund, which was started in 2003 to help less fortunate patients in the state of Georgia purchase garments, bandages, and other devices.
This fall, the American Lymphedema Framework Project and the LLN are collaborating to sponsor a two day program. The ALFP Stakeholders Meeting, “Moving Forward Together in Improving Lymphedema Care,” will be held on Friday, October 24 to prioritize national issues and goals in relation to lymphedema. The 17th State of Georgia Lymphedema Conference: “Lymphedema: Basics and Beyond” will be held on Saturday, October 25, to educate and create awareness for lymphatic disease. Patients, family members and the medical community are invited to both programs, which will be held at the Doubletree by Hilton, Buckhead Atlanta location. For more information, visit the LLN website www.lighthouselymphedema.org.
For our future goals, we are encouraging other areas to sponsor local lymphedema conferences, start support groups, and start fundraising. Patients and therapists in many areas call and ask how they can start a Bandages and Garment Fund to help patients. I always say, “Work on contacting your representatives to pass the Lymphedema Treatment Act.” Life would be so much easier for patients and our certified lymphedema therapists if the bill would pass.
But in order for things to change, we need more patients to stand up and speak out. Through the NLN’s Lymph Science Advocacy Program, patients interested in advocacy work can attend the NLN’s conferences and meet with those at the forefront of lymphatic research and education. The conferences are a terrific source of updated information and graduates participate in several webinars and discussions in preparation for the conference.. You hear quality speakers/presenters from across the world. The knowledge from these programs sends you home with new energy and gives you hope that there is research being done that possibly one day will cure lymphedema.