Written by Jennifer Edmondson and Teresa Iattoni

Chances are, unless you or a loved one has Lymphedema, you might not have ever heard of this serious and potentially life-threatening disease. Jennifer Edmondson, JD, a secondary Lymphedema survivor, and Teresa Iattoni, DPT, CLT, CES, certified Lymphedema therapist, begin a new series of articles about Lymphedema, and share important information and valuable insights from the perspectives of a Lymphedema survivor, and a healthcare professional specializing in Lymphedema care.

Tell us about yourselves.

Jennifer: I’d never heard of Lymphedema before my diagnosis, which followed my surgeries and treatments for metastatic breast cancer. I feel fortunate that Teresa has been my certified Lymphedema therapist for the past 11 years.
I’m a Wisconsin attorney, small business owner with my husband John, mom to Catie, and founder and CEO of Health, Education & Welfare (HEW), a nonprofit that provides new and innovative programs and services relating to Lymphedema. HEW’s Advances in Lymphedema Care conference is Wisconsin’s first and only Lymphedema conference for survivors and healthcare professionals, providing direct access to Lymphedema experts and national manufacturers of Lymphedema products. Teresa is the conference mastermind. https://www.lebontadipio.com/all-things-Lymphedema
In 2019, HEW established The Compression Garment Fund, which is Wisconsin’s first and only financial aid program helping Lymphedema survivors obtain their medically necessary compression garments. The Fund was started after Teresa raised awareness of the lack of coverage by private insurance, Medicare, and healthcare systems. Since 2019, HEW has provided over $6,000 in compression garments to Lymphedema survivors in need. lebontadipio has been our Catalyst level supporter helping to make The Fund possible.

Teresa: I became a “lymphomaniac” in 2004, when I attended my first Lymphedema continuing education class. After my first experience of learning and treating individuals impacted by Lymphedema, I was hooked and have attended basic and advanced training in the Leduc Method of Lymphedema Management, national and international Lymphedema conferences, and multiple virtual educational events. I completed my transitional doctoral degree in physical therapy in 2020. I view participating in continuing education as inspiring. It has been my pleasure to work with Jennifer in planning and presenting HEW’s Advances in Lymphedema Care conferences. Currently, I work providing care for cancer survivors, patients diagnosed with orthopedic conditions and/or Lymphedema, and have a special interest in all things equestrian.

What is Lymphedema?

Lymphedema has been defined as an accumulation of protein-rich fluid in an individual’s tissue spaces³. It’s a potentially life-threatening disease of our bodies’ lymphatic system, which is an essential part of our immune system. There is no known cure for Lymphedema. Once you have it, you have it for the rest of your life. And left unmanaged and uncontrolled, Lymphedema can cause permanent damage to the immune system, lead to illness, pain and suffering requiring hospitalization, and possibly death.

Lymphedema affects an estimated 10 million Americans – more than the combined totals of Americans living with AIDS, ALS, Alzheimer’s, MS, Muscular Dystrophy, and Parkinson’s¹, and nearly 250 million worldwide^3a. Yet the general public is relatively unaware of the disease, and healthcare providers who do not specialize in Lymphedema tend to lack accurate information, such as how to recognize the early signs.

When our lymphatic system works the way it’s supposed to work, we barely notice what’s happening – we don’t feel it working. It just does. The lymphatic system includes: a large vascular system which travels throughout the entire body, thymus, spleen, and bone marrow². The function of the lymphatic system consists of the following; 1) regulation of fluid balance, 2) transportation of immune cells, 3) removal of waste materials and destroyed bacteria, which are then processed by the kidneys or liver, and 4) fat cell digestion in the intestines². In general, the lymphatic system keeps every thing in balance, fights infection, and cleans out waste materials.

Why did it happen to me?

People are either born with Lymphedema (primary Lymphedema), or develop secondary Lymphedema after sustaining a traumatic injury to the body or having surgery and treatment for cancer. In fact, approximately 68% of secondary Lymphedema patients are diagnosed following treatment for cancer⁴. Factors that increase an individual’s risk of developing Lymphedema include:
• an elevated body mass index above 30
• removal of lymph nodes
• Taxane chemotherapy
• radiation therapy⁵

Of the individuals who will be diagnosed with secondary Lymphedema, 80% have developed Lymphedema during the first 3 years after cancer treatments⁶. Although the highest percentage of cases occurs in those first years, secondary Lymphedema risk is life-long. Breast cancer survivors who have experienced a skin infection, on the arm or breast, on the same side from which of lymph nodes were removed have been found to have an associated onset of Lymphedema⁷.

Jennifer: I had three of the four factors listed above. I had all left axillary lymph nodes removed; Taxane was one of the three chemo drugs I got; I had radiation therapy. My Lymphedema symptoms appeared after my reconstruction surgery.
Teresa: Over the last 24 years of being a physical therapist, it has become evident to me that addressing any symptoms early results in better overall outcomes. My patients who were able to initiate Lymphedema management in the first month after initial symptoms have been able to achieve improved size of their involved body region, minimize risk for skin infections and other complications associated with untreated Lymphedema. If you have not been able to receive treatment in that first month, don’t give up…I have had multiple patients who have not had treatment for years who have had excellent results with comprehensive Lymphedema treatment.

What are the signs I might have Lymphedema?

At the first signs of the symptoms listed below, you should contact your medical provider as soon as possible. Ideally, you should be examined by a certified Lymphedema therapist or medical professional who is trained and specializes in Lymphedema Management. The symptoms are:
• A feeling of heaviness or tightness in the limbs or other body part
• increased size in the limb or other body part
• clothing or jewelry feels tighter than usual
• aching in the swollen region
• fever
• the limb or other body part is hot to the touch, and the skin has a blotchy redness

It’s possible that these symptoms could be caused by other conditions (not Lymphedema), which is why it’s important to seek out medical care as soon as possible. Examples of other conditions that can cause swelling include: venous insufficiency/varicose veins, diabetes mellitus, blood clots, congestive heart failure, pulmonary hypertension, kidney disease, gout, and allergic reactions.

Does early detection and early treatment of Lymphedema matter?

Yes! Starting treatments early (ideally in the first weeks after first symptoms) for Lymphedema has been found to be imperative to decrease the severity of symptoms and potentially prevent permanent Lymphedema. Traditionally, Lymphedema treatments are provided by occupational and physical therapists who have received advanced training and certification to provide manual lymphatic drainage, multi-layer bandaging, fit and recommend appropriate Lymphedema garments/pumps/bandaging supplies, education in appropriate risk reduction practices, and home exercise programs.

Teresa: Early detection, intervention, and treatment are incredibly important to a patient’s quality of life. For instance, the best chance to resolve Lymphedema is addressing it during the initial stages within the first month of symptoms. I believe knowledge is power, and if at all possible, if an individual is at risk of Lymphedema, ask your provider for a referral for education and risk reduction strategies. If your medical provider is not comfortable with that plan, monitor your symptoms of heaviness, aching, fullness, tightness, or indentations from your clothing and at the first signs ask for a referral to a Lymphedema therapist.

Jennifer: Early detection and treatment has made a world of difference for me. I will always be grateful to a visiting nurse who checked on me after my double mastectomies. Well before I had any Lymphedema symptoms, the nurse told me to consult with a certified Lymphedema therapist as soon as possible, so they could measure my left arm to get a baseline measurement, to be checked for any signs of Lymphedema, and for me to learn about the symptoms. I had been told that my chances of getting Lymphedema were unlikely. We now know that was incorrect information – because I had all the left axillary lymph nodes removed, and chemo, radiation and reconstruction surgery, I actually was at high risk of developing Lymphedema.

Because I was able to consult with Teresa before I ever had any symptoms, I was able to learn about Lymphedema, and the signs to look out for. I became a regular patient of Teresa’s, who gave me important advice and care. When Lymphedema symptoms arose following my reconstruction surgery, I knew right away what was happening, and I was able to start treatment right away. I’ve been able to keep my Lymphedema under good control. It has not stopped me from doing things that I want to do.

As a result of my own personal experience, I believe that early detection and treatment would help prevent unnecessary pain and suffering, and also prevent the additional, expensive costs of medical treatment and hospitalization.
If it were up to me, every person who undergoes any type of surgery or who experiences physical trauma to the body would be referred to a certified Lymphedema therapist, for an initial examination to check for signs of Lymphedema, and also for patient education about what to look out for.

Is Lymphedema really such a big deal?

Teresa: Yes, it is a very big deal. Lymphedema is an incurable and potentially life-threatening disease. Left unmanaged and uncontrolled, Lymphedema can permanently damage the lymphatic vessels, which can lead to health complications such as cellulitis infections, pain and suffering, amputation, and sepsis; repeated hospitalizations, and possible death. Each repeated bout with cellulitis infections increases the risk of permanent damage to the immune system, making the person more vulnerable to other life-threatening illnesses.
Unmanaged Lymphedema has resulted in several of my patients having severe cellulitis infections requiring hospitalization for 5-7 days, increased size of involved extremities to be more than double the size of their non-involved limb, and extensive skin changes/fibrosis.

Jennifer: I’ve never had to be hospitalized for Lymphedema, but, there were years when I had multiple cellulitis infections, and that was very scary. I’d have a very high fever, flu-like symptoms, and my arm would swell up and be hot (from the infection), and I’d develop a rash. Each time I had a cellulitis infection, I was afraid that permanent damage would be done to my lymphatic vessels, and that I might develop sepsis. I remember a woman who had Lymphedema told me that she had been hospitalized numerous times for cellulitis infections, and each time she was wheeled into the hospital, she was afraid she was going to die there.

Can I have a normal life?

Yes! Lymphedema is a manageable condition. You can lead a fulfilling life by making modifications to keep your Lymphedema in check. It’s a ‘new normal’. Surrounding yourself with supportive family, friends, and medical providers is essential (physician, nurse practitioner, Lymphedema therapist, and holistic providers).
Teresa: At one of the most inspiring conferences I attended, I had the opportunity to listen to keynote speaker Deborah Cordner Carson tell her story of managing her Lymphedema and participating at a high level of CrossFit. Check out her story from 2012, https://games.crossfit.com/article/persistent-deborah-cordner-carson. A Lymphedema diagnosis can be disheartening and make you feel like the world is caving in on you, but keep on going, and researching ways to manage your symptoms to return to the things that your love.

Jennifer: I encourage my fellow survivors to keep hope alive. Try activities you enjoyed before your diagnosis. My surgeries and cancer treatments had left me very weak. So I signed up for the LiveStrong program at my local Y. Then I returned to ballet classes, tennis, and gardening. And walks with my daughter along the river. Don’t be afraid to try. If something doesn’t work out, that’s okay – look for something else, and keep looking until you find the activity that’s right for you. The key is to keep on moving, and moving forward.

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References:
1. Lymphedema Education and Research Network. (2019). Ten Things Ovarian Cancer Flyer [pdf]. Retrieved from https://lymphaticnetwork.org/images/uploads/LERN_Ten_Things_Ovarian_Cancer_Flyer.pdf
2. Ridner, S. (2013). Pathophysiology of Lymphedema. Seminars in Oncology Nursing, 29(1), 4-11. https://doi.org/10.1016/j.soncn.2012.11.002
3. Foldi, M., Foldi, E., & Kubik, S. ed. (2003) Textbook of Lymphology for Physicians and Lymphedema Therapist. Germany: Urban Fischer
3a. Schulze, H., Nacke, M., Gutenbrunner, C., Hadamitzky, C., Worldwide assessment of healthcare personnel dealing with lymphoedema. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5901432/
4. Lymphedema Treatment Act. (2017). Lymphedema Not One Disease [pdf]. Retrieved from http://Lymphedematreatmentact.org/wp-content/uploads/2017/01/Lymphedema-Not-One-Disease.pdf
5. Ayre, K., & Parker, C. (2019). Lymphedema after treatment of breast cancer: a comprehensive review. Journal of Unexplored Medical Data, 4:5. https://doi.org/10.20517/2572-8180.2019.02
6. Petrek, J. A., Senie, R. T., Peters, M., & Rosen, P. P. (2001). Lymphedema in a cohort of breast carcinoma survivors 20 years after diagnosis. Cancer, 92, 1368-1377. https://doi.org/10.1002/1097-0142(20010915)92:6<1368::aid-cncr1459>3.0.co;2-9.
7. McLaughlin, S., Wright, M., Morris, K., Giron, G., Sampson, M., Brockway, J. & VanZee, K. (2008). Prevalence of Lymphedema in women with breast cancer 5 years after sentinel lymph node biopsy or axillary dissection: objective measurements. Journal of Clinical Oncology, 26(32), 5213-5219. https://doi.org/10.1200/JCO.2008.16.3725

I’d become an attorney because I like helping people. For many years, I’d wanted to start a nonprofit, but I didn’t know what its focus would be. Then, following some life-changing events, Health, Education & Welfare (HEW) was born. And we’ve made Wisconsin history.

A month before my 50th birthday, I was diagnosed with metastatic breast cancer.  A routine annual mammogram detected cancer, and biopsy and MRI confirmed the cancer had spread to all the lymph nodes under my left arm. I was convinced I was going to die.  I’d never see my daughter graduate from high school. Or enjoy retirement with my husband. Or ever walk our little fluffy rescue pup, Sammy.

I underwent double mastectomies, removal of all left axillary lymph nodes, followed by AC-T chemo, radiation, and prophylactic salpingo-oophorectomy surgery. Then I developed Lymphedema in my left arm.

A forced march, not a "journey".

Like many cancer patients, my chemotherapy side effects were horrible. It felt like I was being forced to march down a never-ending, rocky dirt road, and every time I’d fall, weak from exhaustion, I’d be pulled up and forced to continue. 

During the first chemo treatment, my windpipe closed up and I couldn’t breathe. There was no alarm or call button. Luckily, a nurse who was emptying a garbage bin saw me flailing my arms. The massive doses of steroids that suppressed allergic reactions kept me wide awake for two to three consecutive nights after each chemo treatment. 

I was sleep deprived. I didn’t feel like eating. I lost my sense of taste and smell.  I had recurrent sinus infections and coughing fits with dry heaves. I had to have an Albuterol inhaler. I couldn’t walk more than a half block before becoming out of breath and fatigued. I lost all my hair. Though I had friends and family around me, I felt very much alone.

Trying to make sense of the pain and suffering – looking for signs.

In desperation, I prayed for signs to show me what was I supposed to do with this pain and suffering. To this day I’m still getting signs.

I started manual lymphatic drainage massage therapy, and wearing a compression arm-sleeve on my left arm. Lymphedema is an immune system disease. The lymphatic vessels don’t move the lymphatic fluid normally, so the fluid builds up and makes the body part swollen. The lymphatic fluid can become infected, resulting in cellulitis, which can cause permanent damage to the vessels, possibly leading to high fever, pain, hospitalizations, amputation or deadly sepsis. Lymphedema must be controlled on a daily basis.

First Sign. My certified Lymphedema therapist, Teresa Iattoni, and I discussed lots of topics during my hour-long manual lymphatic drainage massage sessions. Compression garments are an essential part of a comprehensive medical treatment plan for Lymphedema. My insurance didn’t cover mine, but I could afford them. I learned Medicare doesn’t provide any coverage. Health insurance doesn’t always provide adequate, or any coverage. Healthcare systems generally don’t provide financial assistance. Patients who can’t afford compression garments go without - putting them at greater risk of developing life-threatening complications. 

Second Sign. Teresa’s dream was creating a Lymphedema conference for both healthcare professionals and patients. None existed. Mine was starting a nonprofit, but I didn’t feel ready to do that yet.  I was on the board of a local foundation. We approached them. They agreed to handle everything - registration, volunteers, marketing, and catering. Teresa and I would secure the presenters and exhibitors. We set the date. We were on our way!

Third Sign. Three months later, the foundation advised they were dissolving, because the oncology practice that provided their staff and funding was closing down. Push had come to shove. It was time to start that nonprofit.

On April 12, 2018, Health, Education & Welfare was born. On November 17, 2018, HEW presented Wisconsin’s first and only Lymphedema conference for healthcare professionals and patients – Advances in Lymphedema Care Conference, providing direct access to nationally recognized Lymphedema experts, and manufacturers of Lymphedema products. Over 100 were in attendance. Teresa Iattoni remains our Conference Mastermind.  We are blessed with talented and committed board members, supporters, and volunteers.

lebontadipio – Our Catalyst. 

Health, Education & Welfare is a tiny, all-volunteer nonprofit. We work with local and national media, healthcare providers, individuals, businesses, and nonprofits. One very special supporter is lebontadipio, who has been with us from the very start. HEW created a special designation especially for lebontadipio – our Catalyst. 

I’ve been a lebontadipio customer since 2011. I value their excellent customer service, and affordable prices. They were incredibly supportive of HEW from the very start. lebontadipio donated compression garments to help The Compression Garment Fund get started. They provided samples for patients, physical therapists and other healthcare professionals, and door prizes.  lebontadipio’s unwavering encouragement provided a positive energy that has sustained HEW through challenging times. We look forward to continuing to partner with lebontadipio.

Wisconsin’s first and only.

Since 2019, HEW has provided over $6,000.00 worth of compression garments to people in need. This is due to the enthusiastic support and encouragement we have received from lebontadipio, and our wonderful supporters. We’re an all-volunteer nonprofit, and all proceeds go directly to making our programs and services possible. Our Advances in Lymphedema Care conferences, and Compression Garment Fund continue to be Wisconsin’s first and only. 

We welcome and enjoy working with others! Come and check us out at https://www.lebontadipio.com/ to learn more about our innovative programs and services, and the wonderful people we help. Follow us on Facebook @HEWWISC1. And here’s the link to our NBC television interview about our Advances in Lymphedema Care conference. 

We’d love to hear from you and get to know you!

Here at lebontadipio, our customers are very important to us. Each day, we talk with people who have been diagnosed with lymphedema and hear not only their questions, but their struggles. Lymphedema is commonly overlooked by doctors and can go undiagnosed for a very long time. Many people battling breast cancer are unaware that lymphedema can be a side affect to treatment and are unprepared for managing this condition. It can also be hard to obtain the resources needed to manage lymphedema due to a lack of regional availability of therapists and the financial cost. Since there is no cure for lymphedema yet, patients must wear a compression armsleeve everyday which can be costly, especially depending on the severity of the swelling.

The lebontadipio Armsleeve Assistance Program

In light of this, BrightLife has partnered with the Susan G. Komen Foundation to provide compression armsleeves to those who may not otherwise be able to afford it. We will be providing free compression sleeves to patients at six different Komen grantee organizations here in Washington, D.C. These awesome organizations will help the patient measure for the correct fit and find the best armsleeve to help manage their symptoms. They will then send this information to us, and we ship out the armsleeve free of charge the same day. Check out Francia, pictured on the left, happily showing off her new compression armsleeve!

Enter Our Breast Cancer Awareness Giveaway!

You can win! In honor of Breast Cancer Awareness Month, lebontadipio wants to give back to the lymphedema community. To help others with the financial burden of lymphedema, we are offering a $100 gift card for one lucky winner to choose any armsleeve or compression stockings of their choice! See below for entry and details.

Lymphedema Style Guide

lebontadipio offers tons of compression armsleeves in a variety of sizes, colors, patterns and fabrics so you can find the perfect sleeve for you. If beige isn’t your style, we have lots of fun patterned armsleeves like LympheDivas and the new Juzo Signature Prints. The Juzo Dream Collection offers armsleeves and lower extremity compression garments in fun seasonal colors and tie-dye patterns. If you’re looking for eye-catching patterned leggings, try the new Juzo Soft Print Leggings, available in a large variety of patterns. Check out our style guide below for our customer’s favorite lymphedema options:

Lymphedema Compression Garments for Fashionistas

• LympheDivas Armsleeves
• Juzo Signature Armsleeves 
• Juzo Dream Collection
  
• Juzo Soft Print Leggings – new!

Mild to Moderate Lymphedema Garments

• Solidea Compression Garments – 15% off this month only!
• Juzo Soft Collection
• Allegro Armsleeves – lowest price!

Moderate to Severe Lymphedema Garments

• Juzo Dynamic Collection
• Jobst Relief Compression Garments
• Allegro Surgical Weight Garments – lowest price!

Lymphedema Compression Wraps

• Alternative Wraps
• Full Leg Wraps

Sizing Help

If you’re shopping on your own and don’t know your size, check out our Size Machine! Just enter your measurements and we’ll tell you what fits you best in all of the major brands. If you still have questions or would like some help deciding, please contact our customer service team.

You Can Win!

The rules are simple – the more you share, the more likely you’ll win! You can comment on this blog post to share your experience with Breast Cancer or Lymphedema, or share this post on social media. For details, see the Rafflecopter Contest Box below. Good luck!

a Rafflecopter giveaway

Thelma Jones is making remarkable strides in breast cancer awareness. As a community activist for over 30 years and a breast cancer survivor herself, Thelma understands the importance of cancer awareness and education in her community. In fact, she was named a White House Champion of Change in 2011 for her leadership in the fight against breast cancer. She also received the Mayor’s coveted Community Service Award in the Lifetime Achievement category in 2010. Most recently, Thelma won the 2015 Thurgood Marshall Center Trust Phenomenal Woman Award.

In June 2007, Thelma was diagnosed with breast cancer. Shortly after, she became a certified breast-health educator with the American Cancer Society to work with cancer patients who had recently been diagnosed. After undergoing surgery, chemotherapy, radiation and hormonal therapy, she was able to win the fight. Thelma was inspired to give back to her community and share her story with others. Thelma believes that screening saves lives. She is working on educating people about the importance of regular checkups and knowing what symptoms to look for. The American Cancer Society says that women over 40 years old should have a mammogram done every year.

“Almost from the inception of my diagnosis, I vowed to fight back and use my voice to increase funding for cancer research and to make it a national priority.”

Thelma Jones is currently living in Southwest Washington, D.C. (our hometown!), working as a breast-cancer navigator for Smith Center for Healing and the Arts. Her role is to help her clients find care, schedule mammograms and answer their questions. Thelma emphasizes the importance of finding a good doctor that you trust because you should never feel uncomfortable asking the tough questions. Her goal is to share support and guide patients through this process, showing them the positive side of life after cancer.

Thanks to Thelma’s dedication and passion for her community, she started one of Southwest’s only breast cancer support groups. “Sometimes I would invite people to my house or out on the stoop to talk about breast cancer, and people started saying I had a support group – so I created the breast cancer support group,” said Thelma Jones. The ACS Breast Cancer Support Group in Southwest D.C. has helped over 300 men and women, especially those who are struggling more than others – the ones who have to choose between picking up their medication or paying the bills.

According to the Centers for Disease Control and Prevention, cancer is the second leading cause of death of women in Washington, D.C. If you want to get involved, you can donate to the American Cancer Society, or sign up for an event near you. You won’t want to miss the Relay for Life!

In the picture on the left, check out State Lead Ambassador and breast cancer survivor, Thelma Jones (far left), as Councilmember Cheh presented a breast cancer awareness month proclamation at the City Council meeting. The picture on the right is of Jennifer Aniston (left) with Thelma Jones (right) at the White House in honor of Breast Cancer Awareness Month.

Resources

American Cancer Society

Three Minute Interview with Thelma

What is a Breast-Cancer Navigator?

Where to Find a Support Group in Your Area

“I Have Cancer, But Cancer Doesn’t Have Me”

Thelma Jones – White House Champion of Change

Breast Cancer Symptoms and Diagnosis – BreastCancer.org

Thelma Jones Brings Breast Cancer Awareness Support to Neighborhood

The American Cancer Society Relay For Life

Thelma Jones, Community Activist and Advocate

Cancer Facts and Statistics – American Cancer Society

Connect with Thelma on LinkedIn