My Lymphedema & Lipedema Story

By Sandra Dupree

Three GenerationsThree Generations of Dupree WomenI have always been active – dancing, hiking, and exploring with my family.  When I hit puberty, my legs became heavy.  Pregnancy was another challenging time for me. I gained weight and my legs seemed to change shape.  I no longer had defined kneecaps and my legs appeared lumpier. When I had early-onset menopause. I added 40-50 pounds in a few months, and my legs felt like cement blocks. Hiking became very difficult. My legs were painful, and I was easily fatigued.

I became a certified lymphedema therapist and immediately began to connect my younger daughter’s symptoms with the diagnosis.  She was seSandy2Pictured with Daughteren by the vascular anomaly clinic at CHOA and was given a diagnosis of lymphedema. I still didn’t attribute my leg heaviness and swelling to lymphedema until I received a diagnosis of stasis dermatitis, which led to a diagnosis of lymphedema for me, as well.  I had all the symptoms, but often wrote them off as something else.  I also received a diagnosis of lipedema, which helped me make sense of so many of my experiences, such as easily bruising, tenderness to touch, and difficulty losing weight— despite efforts to eat healthy and exercise. 

Misdiagnosed as Obesity My Entire Life
By: Francine Schwartz Schuler

I have Francine1had a weight problem my entire life, starting as a baby my mother was told to only give me Skim Milk. As a toddler I had chunky legs and started to become knock-kneed. My mother had me on diets from Weight Watchers, Scarsdale, OA, Hypnosis, and others, where I would lose some weight but never from my legs, especially once I started menstruation. As a young adult I did the Medifast program and got down to 175 pounds, I was thinner on top and 2 sizes bigger on the bottom, even with going to the gym daily doing cardio and aqua aerobics. I had to stop because my liver enzymes elevated rapidly. I steadily regained weight though I was dieting and exercising.


In my 30’s I rose to my highest recorded weight of 425 before finally haviFrancine2ng WLS in 2016. I lost 120 pounds, then started gaining weight primarily in my hips, thighs, buttocks, and abdomen. I was also rapidly losing my mobility and was in intractable pain. I had been diagnosed with Sjogren’s Syndrome, which was causing my arthritis to advance, chronic fatigue, and an immense amount of pain. In 2018 I had trouble walking and doing other activities of daily living and was in pain constantly despite being treated by Pain Management. My Quality of Life was flying out the window. In 2019 I could hardly walk, needing a rollator walker, mart carts and wheelchairs, needing help bathing and toileting, and was hardly able to do any household chores. Little did I know I had started Perimenopause and my hip blew up on my right side, my calves and arms got bigger, my extremities were heavy, and I was in continuous pain and miserable.

Acupuncture with Lymphedema presented by Beverley De Valois, PhD, LicAc, FBAcC

Beverley event regDr. de Valois has studied uses of acupuncture for many years. She has treated cancer survivors and lymphedema patients, and found improvements in quality of life outlook, pain, fatigue, anxiety, depression, and sleep issues. Some patients have discovered new energy and improved their self-care after acupuncture treatment.

The use of needles in a limb affected by lymphedema is a controversial topic. Dr. de Valois explained that the needles used in acupuncture are very fine, and she has seen only a low occurrence of mild adverse events, like minor bruising, bleeding, pain, tiredness, and one allergy to the moxibustion smoke sometimes used to heat the needles. She typically avoids using acupuncture in areas of the body known to be affected by lymphedema, finding positive effects can be achieved by applying the needles in other areas. Her philosophy is to ‘treat the root’ of a health issue ‘rather than the manifestation.’

Dr. deValois’ book, Acupuncture and Cancer Survivorship: Recovery, Renewal and Transformation will be published this summer.

Webinar by Nasreen Starner, OTR/L, CLT – March 11, 2023

Review by Sharon Shepard, patient and LLN board member;

and Shelley DiCecco, PT, PhD, CLT-LANA, CI-CS

Lymphedema patients have long hoped for a surgical or pharmaceutical “cure” for this life-long chronic and debilitating condition. The microsurgery field has developed several procedures that offer great promise, but may set up unrealistic expectations for patients. Pre- and post-operative sessions with certified lymphedema therapists are essential for most patients undergoing lymphatic surgery. Nasreen Starner, OTR/L, CLT, works with lymphatic surgeons at Cleveland Clinic in this cutting-edge field. For more information, see supermicrosurgery for the Treatment of Lymphedema.

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Lymphedema: An Interview with Joan White, Lighthouse Lymphedema Network (Episode 80, To Your Health with Dr. Jim Morrow) on BusinessRadioX.com

Joan White with the Lighthouse Lymphedema Network was Dr. Morrow’s guest on this episode of To Your Health. She and Dr. Morrow discussed what lymphedema is, what causes it, and the evolution of treatment over the years. They also talked about how to find certified therapists, the need for research on children with lymphedema, the future of treatment, and more.

To Your Health is brought to you by Village Medical (formerly Morrow Family Medicine), which brings the care back to healthcare.

Joan AJC Article pic


By Nancy Badertscher. For the AJC

July 19, 2022


Joan White has devoted nearly 30 years to helping others understand and deal with lymphedema, a painful condition that almost always persists for life.

White’s youngest son was still in high school when she was rushed to the hospital for what doctors later determined was a ruptured appendix and gangrene in the colon.

She rebounded from the surgery that kept her alive but not from the lymphedema it created.

Lymphedema is a chronic medical condition that develops from a blockage in the lymphatic system, preventing lymph fluids from draining well and resulting in painful swelling – often in the arms after breast cancer surgery.

By Sharon S. Shepard

Sharon Shepard 150x150

“Did a doctor tell you to do this or is it a personal preference?”

I glared at the snarky nurse over my mask. I had already explained my lymphedema to my doctor, the lab supervisor, and two administrators before entering her clinic. Now this woman implied I was crazy to want blood drawn from the top of my foot, when regular labs aren’t allowed to perform the procedure.


My condition is a mystery to most doctors and nurses because they can’t see it and it’s not well-covered in school – it’s called Stage One Lymphedema, in both arms. When I was diagnosed with bilateral early-stage breast cancer in 2017, the standard of care required removal of up to five sentinel lymph nodes on each side to check them for cancer. My surgeon was careful, and my nodes were all clear, but surgery on the tiny lymphatic vessels can leave scar tissue and blockage.

Fortunately, my hospital provided a lymphedema awareness seminar after surgery. A physical therapist explained the goal of avoiding infection and trauma to the at-risk arms and recommended compression sleeves to prevent lymphedema when flying. Lymphedema can show up years, even decades after damage to the lymphatic system – when an event over-stresses these vessels that drain white blood cells and heavy fluid from tissues.


Click on the Play button to view Sigvaris’ Faces of Lymphedema video.  This video was produced by Sigvaris, Inc. a compression garment manufacturer located in Peachtree City.  Their video was made to highlight the Faces of Lymphedema. 

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The Lighthouse Lymphedema Network is a 501 (C) (3) organization of individuals who are lymphedema patients, or who have an interest in lymphedema.

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