With encouragement from my friend, Laurie, we both attended the 2019 3rd Annual Lymphedema Patient Symposium in Boston, Massachusetts. The event was hosted by Beth Israel Deaconess Medical Center and Harvard Medical School. The focus this year was “It’s All About You!”. It was a one day event packed with relevant and encouraging information.
What most impressed me that day is Boston Children’s Hospital opened up a lymphedema program in October 2016. Since that time, 718 new patients have been seen for lymphedema. To put it in the program’s own words:
The Lymphedema Program in the Department of Plastic Surgery at Boston Children’s Hospital offers individuals of all ages with lymphedema interdisciplinary care. Staffed by plastic and reconstructive surgeons with expertise in the management of lymphedema, the program provides consultation, diagnostic services, treatment options, and research opportunities.
Patients have access to specialists in plastic surgery, nuclear medicine, radiology and rehabilitation. With these resources, the program provides evaluation, diagnosis and treatment options. The team also is working to develop improved treatments for lymphedema through clinical and basic science research.
For me, the above is like a dream come true! We don’t have this comprehensive care in Seattle but it is encouraging to see that the medical community is paying attention to lymphedema patients. My hope is that the above medical care for lymphedema patients will be readily available in all parts of the United States. In the meantime, one has to travel over five hours to receive such care.
The symposium included many other topics including but limited to nutrition, emotional stress of with living with a chronic disease, surgeries, cellulitis, lipedema, and compression. There was even an informative lunch break where attendants broke up in groups with a particular lymphedema challenge and had an opportunity to speak with clinical experts. The keynote speaker of the day was an inspiring young man named Cam Ayala who has diligently been a patient advocate for himself and is now a LE&RN Ambassador (he also was a 2019 The Bachelorette contestant).
Beth Israel Deaconess and Harvard Medical School will continue to host a Patient Symposium every year and a combined Clinical and Patient symposium on even years. Next year it will be a combined program. For those who are unable to attend symposiums, you can go to LE&RN’s website to watch on-line lectures from past symposiums presented across the United States. At this time this recent symposium is not yet posted but there are many informative and interesting videos to watch in the meantime!