By Jane Dweck, New York, NY
Vol. 28 No. 2 - Lymphlink Reprint, Archived April 2015
I am ever so grateful for being accepted into the LSAP (Lymph Science Advocacy Program). Ever since my first conference in 2010, I have met such wonderful people and learned so much about lymphedema and its treatment. I cannot imagine how I ever could have acquired the knowledge I now have and share with other lymphedema patients without LSAP.
Back in 2007, when I was diagnosed with breast cancer and subsequently developed lymphedema in both arms, my trunk, and left thigh, there was much less attention paid to lymphedema research and patient education. There were not many places for patients to go, even on the internet, for accurate information and appropriate treatment.
Armed with all I learned from LSAP, and together with Bonnie Pike, a fellow LSAP graduate, and Dr. Judith Nudelman, we decided to develop a website that would be “one-stop shopping” for information for breast cancer-related lymphedema patients. Thus was born StepUp-SpeakOut.org.
Our goals were to help lymphedema patients live comfortably with their condition by sharing the information we had learned and provide accurate and accessible information about lymphedema, its prevention, and treatment to all women and men who have been treated for breast cancer. We also wanted to raise awareness of lymphedema risks and promote risk reduction practices among all breast cancer veterans; to support those with breast cancer as they pursue prevention and treatment options for lymphedema; and to help them find the resources they need for managing both the risk and the treatment of this condition.
This was no small undertaking. We wanted everyone with breast cancer-related lymphedema to know the different signs and types of lymphedema. We wanted them to know how to find a lymphedema therapist and what to expect from that therapist. We wanted them to know what constitutes a lymphedema emergency. We wanted them all to know about the various garments, day garments, night garments, flat knit, circular knit, custom made, etc, so they could become informed consumers. We also wanted them to know how a properly fitted garment looked as opposed to an improperly fitted garment.
We lymphedema veterans also wanted to share tips on “How to Cope,” from getting through the day with a wrapped arm, to information about gloves, gauntlets, sleeves, and hygiene. In sharing the experiences of others who found solutions to many lymphedema problems and improved their quality of life, much comfort and hope was felt by the “newbies.”
Meeting with the various garment manufacturers and suppliers at the NLN conferences certainly was a learning experience both for the LSAP folks and the vendors. To actually speak to them about some of the specific needs of lymphedema patients and to see them develop new products to accommodate these need, was just amazing. They truly welcomed the feedback from those of us down in the trenches. I have made some wonderful friends who are always willing to help in anyway when we have difficult problems finding the right solution for our lymphedema followers.
In addition to working with my colleagues at StepUp-SpeakOut.Org, I also co-facilitate a lymphedema support group here in New York City at Share. From all I have learned in LSAP, I realize just how uneducated the typical breast cancer-related lymphedema patient is. I was truly shocked at how many had never even heard of a night garment and did not know how to wrap. The knowledge I have acquired through LSAP helps me to help others and educate them to practice better self-care.
Every few months we do a special meeting in one of the five boroughs in New York City, where I bring samples of the various day garments, compression bras, night garments, swell spots, and all those other helpful items that many patients just do not know about. They are so grateful for the information and feel very much empowered to learn that there are things they can do, and products and garments out there that can greatly improve the quality of their lives.
Thank you, Saskia and the NLN, for allowing me to be a part of LSAP and receive such an extensive education regarding lymphedema.
jane [at] stepup-speakout [dot] org