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Why I Became a Lymphedema Advocate – Guest Post by Rebecca Sharp

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 Networkbreastcancer.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.

Rebecca Sharp at NLN conference
Rebecca Sharp at NLN conference

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.

Lymphedema Treatment Act

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.

Bio:

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?

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14 thoughts on “Why I Became a Lymphedema Advocate – Guest Post by Rebecca Sharp

  1. Thank you Becky for being such a powerful advocate! One of the issues I see is not so much that doctors don’t get the actual training in how to manage it, but that they don’t get the training in risk factors, recognition, and the importance of referring to the right practitioner . If doctors would pay more attention to the risk factors such as radiation and even minimal lymphatic dissection- and refer patients to qualified therapists early- perhaps even an education consult for all patients even considered to be at the most minimal risk- we could save a lot of people from developing lymphedema.

    I think it’s also important for patients to be aware that their doctors don’t know everything- they know how to diagnose,= and treat cancer, but they don’t know much about cleaning up the mess they leave afterward. And that’s okay- IF the doctors know about AND acknowledge that there are expert practitioners other than MDs who have the skills and knowledge in how to address these issues, AND MAKE THE REFERRAL EARLY.

    I’m a cancer exercise trainer, and it amazes me how few women who have been through these treatments for breast cancer have been warned about lymphedema by their doctors, for example, with exercise: there are lymphedema precautions that really should be taken when you start exercising again- until you know how your body will respond. With all the evidence on the importance of exercise, it’s rare that I get referrals from doctors. Usually the patient has to find me on their own or through word of mouth.

    1. You are so right Alene! Our efforts are just to get our surgeons, oncologists, etc. to alert patients that they are at risk and what risk reduction procedures can be taken. And if they do develop it where to refer. And to refer when in early stages. Many in our group never heard the word Lymphedema until they had it. Plus the ones with primary Lymphedema go years without a diagnosis. Thanks for you comments.

  2. Becky, you have created such wonderful advocacy and support, and that’s sorely missing. The official organizations just don’t focus on the “patients”/people living with lymphedema. Your reach is far and broad and I’m in awe.
    You help people with lymphedema who are struggling to find a way to live with it.
    And, as a physician who is trained to treat lymphedema, I still can’t get my patients into therapy or get them garments, or get anyone else on their treatment team to care or acknowledge their lymphedema and the current medical literature if focused on “debunking” the myths of lymphedema risk protection. The need to deny lymphedema must be rooted in the pain of causing collateral damage, but it sure causes harm.

    Becky, you just quietly got out there and continue to help so much. Thank you!
    Judy

    1. Hi Judy,

      I feel I have slowly come a long way but a lot of it is due to your input and helping me through the research maze–along with the others in our cadre. We just have to keep on keeping on!

      Becky

  3. Becky,

    Thank you for being such an important advocate. It’s important that we all know about this debilitating condition, something I’ve suffered from and have to keep an eye on. Keep on keeping on!

    1. Ah Jackie, I wish I would be in DC next week but work obligations prohibit that. I will be thinking about the all of you there. Thank you for going.

  4. Thank you Becky for all you do for the ‘lymphedema world’. My wish is that more doctors of all types of practices become more aware. It took months of going to several doctors including a trip to an emergency for a doctor to know what I have (primary lymphedema — first onset just prior to turning 40). To this day I feel like any doctor I go to for even a check up (I.e gyn/primary/chiropractor etc) I have to spend a good amount of the appointment time explaining lymphedema to the doctor/nurses etc. it can be tiresome.

    1. I know how you feel CJ. I just cannot understand why the medical profession does not understand that Lymphedema could be one reason among others for swelling in the limbs. It isn’t even near their radar! Especially primary lymphedema. But with Facebook and blogs like this we are bringing a lot more awareness by educating ourselves to educate our doctors. If I see a new doctor I go armed with information.

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