As many of you know, March is Lymphedema Awareness Month. For the past few years during the month of March, I have tried to feature a guest post by someone who really knows what she is talking about regarding this very important topic. This year I’m excited to feature a guest post by my new friend, Rebecca Sharp. Like me, Rebecca is, and always will be, an educator at heart. She has taken her educator role in a whole new direction as a result of being diagnosed with lymphedema. Rebecca has generously offered to answer your questions about lymphedema, so ask away in the comments section, if you want to. Thank you, Rebecca, for sharing your story at Nancy’s Point and thank you for all your tremendous advocacy work as well. I particularly love that one of Rebecca’s missions is to help others form local support groups for people dealing with lymphedema. So feel free to ask her about that too.
Why I Became a Lymphedema Advocate
by Rebecca Sharp
I could not believe what I was hearing from the nurse practitioner on the phone five years ago.
“You have breast cancer.” she told me.
I was fortunate it was early stage. After a lumpectomy and mammosite radiation for one week, I was ready to move on and take the tamoxifen for the obligatory five years. I had asked about lymphedema but was told with sentinel node biopsy there was no risk. (Wrong!)
Two weeks after radiation ended, my arm, trunk and breast became very swollen. Long story short – I had lymphedema! You don’t just move on with lymphedema especially when told you are at Stage 2, which is not spontaneously reversible. A full course of Complete Decongestive Therapy (CDT) with three months of wrapping, manual lymphatic drainage, and learning that I will have to wear custom compression garments for life to keep the lymphedema at bay ensued.
I quickly found out how time consuming self-care is to keep it at Stage 1.
I am an educator and decided I needed to learn as much about lymphedema as I could. I joined the National Lymphedema Network, the Lighthouse Lymphedema Network, breastcancer.org and became more informed about lymphedema. Plus, I have a fantastic Certified Lymphedema Therapist who is LANA certified and helped me learn much about lymphedema and self-care. To manage my time for self-care I quit full-time teaching and switched to part-time.
I started a support group for lymphedema in Knoxville, TN. We are called Lymphedema Awareness Network of East Tennessee (LANET). We have grown over four years and formed a board. We have some awesome therapists who attend and give us a lot of information. Since our group is open to anyone with any type of lymphedema I felt like I needed to learn as much as I could about all types of lymphedema, not just breast cancer related lymphedema. Our group not only meets for emotional support but also are working on advocacy to get more awareness of lymphedema to our local medical professionals to enable earlier detection and treatment.
I applied for the 2012 Lymph Science Advocacy Program for patients at the National Lymphedema Network (NLN) conference and was accepted. My therapist and I attended the week long conference and I decided to become a more forceful advocate for lymphedema.
Since then I have attended the 2012 Ohio Summit, the 2014 NLN conference, the 2015 World Conference of Lymphology, and four Lighthouse Lymphedema Network conferences in Atlanta. This helps me stay on the cutting edge of what is new in the world of lymphedema. I also get to meet many professionals who are working on lymphedema research and knowledge.
I was asked to present at the World Congress of Lymphology patient summit on starting a support group in your local community. Since then I have helped over five patients start a group in their communities.
I became a board member on the Lymphedema Advocacy Group to work on passage of the Lymphedema Treatment Act to enable Medicare and Insurance patients obtain garments without paying out of pocket. We are working tirelessly to try to obtain passage in the House and Senate by the end of the year.
Even though I am not happy I have lymphedema I feel like there is a reason for it. Maybe the lymphedema world needed one more advocate. I have met some wonderful people along the way who have become great friends. I would have never known them if not for lymphedema.
Becky Sharp resides in Jefferson City, TN and is an Instructor of Education at Carson-Newman University. She is the Chair of Lymphedema Awareness Network of East Tennessee and board member of the Lymphedema Advocacy Group.
Do you have lymphedema and if so, do you have access to a support group, or adequate support, period?
If you have LE, how soon after your cancer diagnosis did it develop?
What would you like to ask Rebecca about lymphedema?